Monday, February 8, 2010

International Travel - The ALS Way

by Ruth Louison

My daughter, son in law, three youngest grandchildren, and two grand dogs live in Birmingham, England. Every year since they moved across the “pond,” I have traveled there for Christmas. There was only one Christmas when I did not go, and we were all miserable. My husband, Ernie, detests flying and has made marginally acceptable excuses in the past for not joining me on my annual journeys. This year’s trip, however, was very different from all the others. I have ALS and now get around outside our apartment in a wheelchair. I can no longer travel alone, so Ernie did the big boy thing and accompanied me.

The first thing we did when booking our tickets was to enter all my special requirements into the airline’s database. They immediately changed our seats so that it would be easy for me to get up and move around if necessary. When we arrived at Newark Airport for our Continental flight to Birmingham we received special treatment from the time we took our suitcases out of the van. The skycap brought us directly to the baggage check counter despite the fact that there must have been at least 100 passengers waiting in line. We proceeded to security check where again we were brought to a special area that allowed us additional time to remove coats and shoes. The agents were very gracious and did their security checks quickly and efficiently but with a joke and a smile. At the gate we checked in and were boarded before other passengers. There were three of us in wheelchairs so we formed a convoy to the plane.

Each plane is equipped with a wheelchair small enough to fit through the narrow aisle of the plane. Two female flight attendants assisted me in getting into the lavatory. I was having some difficulty getting my jeans back up while trying to hold on to the bar so I wouldn’t fall. One of the flight attendants helped me dress. I was apologizing to her (because I tend to do that). She was incredibly kind and told me that she had worked in the medical field prior to changing careers. At the end of the flight we had to wait for my wheelchair to be brought up from the cargo hold. This same flight attendant sat and chatted with us about football and my “NOT The Yankees” hat. We were escorted quickly through immigration by yet another airline representative and assisted with our baggage claim and with getting the bags out to the waiting area to be met by my daughter and son in law.

We stayed at a nearby hotel in a completely handicap-access room. The bathroom was perfectly equipped. There were bars everywhere, a fold down chair in the shower, and a hand-held shower head. The hotel was equipped with two wheelchair lifts because there were two sets of stairs to get to our room. Hotel staff was very accommodating whenever we needed help with one lift that seemed to have a mind of its own. It did work flawlessly the very last time we used it when we were checking out.

The five days we spent with the family flew by. We laughed until we cried, cried until we laughed. The kids are growing up so fast I can’t keep up with them. We had been hoping to perform the “Elfing Ceremony” for Megan, our youngest, but at the last minute she caved in and decided that Santa does exist. She sprinkled “Reindeer Food” (grass seeds) on the front lawn so Santa would be able to find the house. Christmas day was noisy; crazy; wonderful. We played games, caught a nap, had dinner, laughed some more. The next day was Boxing Day, a British holiday that even British citizens have a difficult time explaining. We blinked our eyes and it was time to come home. The most difficult thing I have ever done in my life was to say goodbye to my daughter and the children.

We arrived at the airport Sunday morning and were treated to the same wonderful service – instant check in, quick but courteous security check, and immediate boarding. This time they were able to stow my wheelchair on board, which sped up the exit process quite a bit. Upon arrival, Continental agents made everything easy for us. We were whisked through Immigration and Customs and brought directly to Ground Transportation who immediately arranged for a mini van for the trip to Brooklyn. We arrived home to happy “meows” from our cat, Mooch, who immediately requested a belly rub, and a grumpy glare from our other cat, Babe, who only wanted food.

It has been my experience that because of my lack of mobility I have been looked upon by some with a sneer or a smirk. I didn’t know what to expect on this trip but was more than pleasantly surprised at the superior service and consideration we received. Don’t let the fact that you have a debilitating illness prevent you from traveling. If you let the carrier know in advance that you have special needs, they will be met in a way that will surpass your expectations. It was a long, exhausting trip but it was worth every minute.

You can visit Ruth at www.oldcarmama.com

Ruth Louison, 63, used to work as a Human Resource Generalist at a local City hospital. Ruth is married with one daughter, two stepchildren and five grandchildren. She's addicted to writing short fiction, baseball (sorry, but she's not a Yankee fan), street rods and drag racing. Ruth was diagnosed with Progressive Muscular Atrophy, which is the fraternal twin of ALS, in March of 2009.

Tuesday, February 2, 2010

FREE Teleconference for the ALS Community: New Guidelines on ALS Care

Patients, family, caregivers and Chapter staff interested in the new guidelines issued by the American Academy of Neurology will have the opportunity to join a free audio-conference call sponsored by the Academy and The ALS Association. The call will emphasize what can be done to make life easier and to extend life for people with ALS. Important areas of care needing more research will also be highlighted. Please extend the invitation to your entire ALS community.

February 11, 2010
5 to 6 pm Eastern Time


Presenters:
Robert G. Miller, MD
Carlayne Jackson, MD
Edward J. Kasarskis, MD
Dallas Forshew, RN

The meeting is being offered as both an online event and as a teleconference.

Online event participation is available for the first 1,000 registrants. If you receive a message that the online event is full, please join us for the teleconference (audio-only) presentation. The teleconference dial-in information is at the end of this message.

1. To register for the online event:

• Copy and paste the following link to a browser: http://tinyurl.com/y8o3r6s
• Click "Register.” Audio for the webcast will be streamed to your computer's speakers. If you have challenges with the audio stream or don’t have computer speakers, please use the teleconference dial-in information below.
• If you receive a message that the online event is filled, please join us for the audio presentation via your phone using the teleconference information below. The audio connection will be provided to the first 500 callers. If you receive a message that the teleconference is filled, you can access the recording archive of this presentation (available as of February 16, 2010) on our website at www.ALS-NY.org.

2. To join the teleconference (only) portion on February 11, 5 pm Eastern Time:

Dial-in Domestic Toll Free:: 1-877-669-3239

Dial-in International/Toll: 1-408-600-3600

Participant pass code: 667 887 783, then press #, # (strike # twice)

Copy and paste this link to a browser to access the downloadable AAN presentation that accompanies the audio conference: http://tinyurl.com/ybj2qgm

3. For help, contact The ALS Association and the American Academy of Neurology:

AANpresentation@alsa-national.org

4. To join the event before it starts: Go to: http://tinyurl.com/y8jvuv9

This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, do not join the session.

The ALS Association’s National ALS Advocacy Day & Public Policy Conference.

From YOUR House......To The PEOPLE’S HOUSE!

The ALS Association invites you to join us as we host the 2010 National ALS Advocacy Day and Public Policy Conference in Washington DC, May 9 - 11, 2010.

This powerful event has helped us to realize significant victories for people with ALS, from eliminating the 24-month Medicare waiting period to more than tripling funding for ALS research. But more must be done!

REGISTRATION

To attend the 2010 national ALS Advocacy Day & Public Policy Conference, please register online at www.alsa.org/policy/alsday.cfm. You can also register by calling the Advocacy Department at 1-212-619-1400.

Conference registration and hotel registration are available beginning February, 8, 2010 at 11AM EST.

In order to receive reduced registration rates, please register no later than April 9, 2010.

HOTEL INFORMATION

JW Marriot Hotel, 1331 Pennsylvania Ave., NW, Washington, DC 20004. Phone: 202-626-6998.
In order to receive the reduced conference room rate, you must reserve your room directly with the hotel by April 9, 2010. Note: Reduced room rates are only available for those who already have registered to attend the conference.

In order to request an ADA accessible hotel room, attendees must contact Mary Wisniewski, event planner for the conference, at marywisniewski@comcast.net or by calling 202-746-0043.
The number of ADA accessible rooms are limited so please reserve your room ASAP.

Friday, January 22, 2010

First U.S. Stem Cells Transplanted Into Spinal Cord

ALS Association Chief Scientist Lucie Bruijn, Ph.D., was interviewed by CNN regarding Thursday’s announcement about the first ALS patient to receive transplanted stem cells.

Dr. Bruijn was quoted as saying, “This is the first study to see if the invasive injection into the spinal cord is safe for the patient.”

She went on to say, “Our biggest hopes for stem cells is to significantly slow the progression of the disease.”

To read the full story, click here.

Thursday, January 14, 2010

A Midwinter Night's Dream & The Chase Community Giving Challenge


The ALS Association Greater New York Chapter congratulates the students of Northport High School on Long Island for advancing to the final round of the Chase Community Giving Facebook Challenge. A Midwinter Night's Dream is one of only 100 finalists and the only ALS organization to make it to the final round.

Please join us in supporting them by casting your vote for A Midwinter Night's Dream, Inc. (AMND) as your charity of choice.

The organization receiving the most votes will be awarded $1 million; the top five runners-up will each receive $100,000 in this final round. You can cast your vote from Midnight, January 15 through Midnight, January 22, 2010. To vote for A Midwinter Night's Dream, Inc. (AMND) as your charity of choice by clicking here.

A Midwinter Night's Dream has pledged to donate $50,000 of their winnings to our chapter. For more information on A Midwinter Night's Dream click here.

Tuesday, January 5, 2010

New Report: Practice Parameter: Care of Patient with ALS

Practice Parameter: The Care of the Patient with Amyotrophic Lateral Sclerosis
Report of the Quality Standards Subcommittee of the American Academy of Neurology

New guidelines from the American Academy of Neurology released in October, 2009 identify the most effective treatments for amyotrophic lateral sclerosis.

Click here to view the Practice Parameter

(This link will bring you to the AAN website)

We Need Your Input: Would you be interested in attending an upscale golf event to be held in September 2010 in Westchester, NY?

As a friend of the ALS Association’s Greater New York Chapter we’d like your opinion on a Golf Event in 2010 to benefit the Association we are trying to establish. The event would take place in late September (final date TBD) at Quaker Ridge Golf Course in Scarsdale, NY (Westchester County).

Some information about the golf course: Quaker Ridge is ranked #33 in the United States by Golf Digest and is also known as “Tillie’s Treasure.” Course Architect A.W. Tillinghast is also the designer of Winged Foot East & West, Baltusrol Upper & Lower, and the famous Bethpage Black Course – all hosts of multiple USGA Major Championships.

It’s much too early to determine actual pricing, but our goal would be to keep it at $800 or less per person. We know there are many outings that charge more than $1,000 per person so we’d like to keep it economically feasible both personally and corporately.

We’re asking anyone interested in taking part in this event to reply by email to 2010ALSGolf@als-ny.org. This WILL NOT commit you to buying tickets at this time. More information will follow for those who express interest in the event depending on the response.

A New Year's Message

By Debbie Schlossberg, LMSW

“In the sweetness of friendship let there be laughter and sharing of pleasures. For in the dew of little things the heart finds its morning and is refreshed.” Kahil Gibran

Looking to the New Year what do we hope for? For many of us, the things we dream of and strive for have changed a bit from what they once were. Do we hope to acquire new things? Material possessions? More likely we’re now focused on simple pleasures: the beauty of our interpersonal connections; the rapture of music which moves us; the purpose we assign to waking each day and being of importance, just by virtue of our existence, to those who love us.

At a time when the ability to perform simple tasks is appreciated, it becomes clear that items we once coveted or the glorious experiences we once planned, give way to the pure bliss of appreciating a good laugh or even a cup of steaming tea.

We hear a lot in the media and from self-help gurus about simplifying our lifestyles, getting rid of excess and whittling down to the essence of what we truly need to get by and be happy. Perhaps at no other time is the wisdom of this more striking than when we are forced to let go of the extraneous “things’ because we no longer have the ability to engage with them. So now we have a gift of sorts. We are humbled by our new limitations and are challenged now not by how to obtain or where to celebrate, but simply by how to celebrate. And if we are true to ourselves, we might just realize that the people we are celebrating with is what it’s all about.

Happy New Year

Monday, January 4, 2010

Ride For Life Donates $95,000 This Year To Our Chapter

When Chris Pendergast made his first 350-mile journey from Yankee Stadium to Washington D.C. in 1998 it was the beginning of what was to become a journey of many thousands of miles. It became an annual event at which ALS patients ride their electric wheelchairs down highways and byways to raise funds for a cure and create awareness for ALS, inspiring the organization’s name, Ride For Life.

Over the years Ride For Life and The ALS Association Greater New York Chapter have partnered in advancing scientific research and establishing an ALS Certified Center at Stony Brook University Hospital to provide care to people living with Lou Gehrig’s disease on Long Island.

This year, Ride For Life generously donated $95,000 to The ALS Association Greater New York Chapter. The funds will be dedicated to support research efforts and the Stony Brook ALS Certified Center of Excellence.

This latest donation from Ride For Life makes over $500,000 given to the chapter in the past 12 years.

"Chris has inspired our community to come out and support our fight against ALS," said Dorine Gordon, president and CEO of The ALS Association Greater New York Chapter. "He has become a symbol of hope and a hero in the community and we are very grateful for his continued support."

Thursday, December 24, 2009

The "Elfing" Ceremony

by Ruth Louison

As a Jewish child growing up in a predominantly Jewish neighborhood, most of my friends celebrated Chanukah. I always thought it was kind of boring not having a cool dude like Santa leaving presents under the menorah. Christmas trees always took my breath away; even the ones that closely resembled Charlie Brown’s scrawny little shrub. Every year my parents would leave one gift “from Santa” at the foot of our beds for my younger sister and me to find on Christmas morning. The two that stand out in my mind are a tin dollhouse when I was four, and a very tall rag doll that, when attached to your shoes with elastic bands, would dance with you. I have no recollection of precisely when I finally gave in and accepted the fact that the parents were Santa and it was all a charade. I probably told my sister as soon as I found out. Any opportunity to make her unhappy was a gift in itself.

Fast forward to my daughter and Santa. My father told me that if I was not married to a man who wasn’t Jewish and I put up a Christmas tree, he would disown me. Since a Christmas tree was out of the question I did the same thing my parents used to do. I left her present at the foot of the bed along with a little note from Santa. She was thrilled. I remember her arriving home from school one day very disgruntled, having been told by her classmates that Santa was a fraud. I gave her a hug and asked if she wanted to return her presents. That was the last time she complained.

Years flew by. My daughter married and was the mother of three beautiful children. There were no restrictions placed on anything, so we did the whole deal for Christmas. Heather, the oldest, came home one day shortly before her 8th Christmas and announced to her parents, “I know that you guys are Santa, AND the Tooth Fairy, AND the Easter Bunny.” Boy, were we busted. Knowing full well that Heather would not hesitate to break this news to her younger siblings, we had to think fast. I suggested that it would be fun to make her a part of the festivities. We told her not to say anything to the others and that she would find out why on Christmas Eve.

I created a certificate trimmed with holly and Santas that read as follows: “Welcome to Santahood, Heather Lynn. Your parents, and Grandma and Ernie, who love you dearly, wish to take this opportunity to welcome you to the adult festivities of the Christmas season. This year, on Christmas Eve 2004, you will join us in stuffing stockings, wrapping packages, and setting out “Santa gifts” under the tree. We are proud and happy to have you be part of this wonderful time, but you must understand that being “Santa” brings with it many responsibilities. It is a sacred trust. We have kept that trust for you, so that you could enjoy waking up on Christmas morning to the wonderful gifts that “Santa” brought while you were sleeping. We wish to preserve that magical time for your sister and brother, who have many Christmas mornings to look forward to. We must have your solemn oath that under no circumstances will you tell them that we are “Santa.” If they ask, you are to send them to your parents or your grandmother. Please do not disappoint us, because this is very important to us, and to your brother and sister, who still believe. We want you always to remember that Santa is in your heart. The spirit of Santa and of Christmas is one of love and giving, not only of receiving presents. We are certain that you will not appreciate this until you are older, but please keep this certificate among your most treasured possessions to be shown to your children when they are your age. We love you more than anything in the world.”

We bought her a Santa hat and a bag of stick-on gift bows. We sent her to bed with her siblings, where she waited patiently for them to (finally!) fall asleep. She joined us in the living room where we solemnly placed the hat upon her head, handed her the bag of ribbons and read the certificate to her. We then declared her an official Elf. You have never seen a child so excited. She helped us finish stuffing stockings, put the bows on all the presents and carefully inspected the tree for any irregularities. Satisfied that all was in order, Elf Heather marched happily to bed to await Christmas morning.

Her brother and sister both were “elfed” - Amanda at age 8, and Christopher, who held on to Santa until he was almost 9. Several years later, another sister (Megan, now 7 years of age) came into our lives. She has now declared that she knows we are Santa. We will have a ceremony for her this year but it will be a bit different. She does not have younger siblings who believe in Santa (the dogs don’t count). She does, however, have many friends with younger family members, so we have amended the certificate to reflect the current circumstances.

I am very proud of my grandchildren and of the way they have grown, and joined in our Christmas celebrations. I must confess, however, that I really do miss Santa.

You can visit Ruth at www.oldcarmama.com

Ruth Louison, 63, used to work as a Human Resource Generalist at a local City hospital. Ruth is married with one daughter, two stepchildren and five grandchildren. She's addicted to writing short fiction, baseball (sorry, but she's not a Yankee fan), street rods and drag racing. Ruth was diagnosed with Progressive Muscular Atrophy, which is the fraternal twin of ALS, in March of 2009.

Tuesday, December 22, 2009

$7.5 Million for the ALS Research Program at DOD $2.5 Million for Respite Care

This weekend, the U.S. Senate appropriated an additional $7.5 million for the ALS Research Program at the Department of Defense (DOD), a 50% increase over last year! The funding is in addition to the $6 million (20% increase) Congress appropriated for the National ALS Registry last week and also comes as Congress added another $2.5 million to support the Lifespan Respite Care Act, which helps to fund respite care programs in the states.

We would like to thank everyone who contacted their Members of Congress throughout the year in support of the ALSRP. Your efforts led Congress to significantly increase its commitment to the ALSRP, something that was not done for most other disease research programs. The legislation now heads to the President, who is expected to sign it into law.

The ALSRP is playing a vital role in the search for a treatment for ALS. With this funding, the program will have received a total of nearly $18 million to support translational research, which is specifically designed to find a treatment for ALS.

However, the ALSRP is particularly important during the current economic climate when researchers and institutions have faced challenges securing private funding for research. That's because unlike other research funding at DOD, ALSRP funding is available to researchers throughout the country, including those who may not otherwise have been able to pursue ALS research. Moreover, the ALSRP is taking a strategic approach that involves input from top ALS researchers in the private sector as well as leaders from the DOD and Department of Veterans Affairs. Through this partnership, the ALSRP is helping to ensure that research dollars support the best science and those programs that show the most promise for finding a treatment.

$2.5 Million for Respite Care

In another victory for people with ALS, Congress has appropriated an additional $2.5 million for respite care, bringing total funding to $5 million over the past two years. The funding is available to states on a competitive grant basis and will be used to expand the ability of states to support local respite care programs available to people with ALS and other diseases. The Association is working closely with the Department of Health and Human Services and our partners in the Lifespan Respite Coalition and will keep the ALS community updated as this funding is distributed to the states.

Friday, December 11, 2009

House Votes to Increase ALS Registry Funding

The House of Representatives passed legislation that will appropriate an additional $6 million for the National ALS Registry at the Centers for Disease Control and Prevention (CDC). This is a 20% increase over last year and demonstrates that Congress has made funding for the Registry a top priority - something that would not have happened without your efforts to contact Congress and tell them why more must be done in the fight against ALS.

The Senate is expected to vote on the bill as early as next week and we will keep you updated as the legislative process continues.

Registry Begins to Collect Data

As we reported earlier this year, the CDC is in the process of identifying ALS cases from throughout the United States utilizing data obtained from national databases, such as Medicare, Medicaid and the Veterans Administration. The Agency also has launched the first phase of the ALS Registry website, www.cdc.gov/als. When fully launched in the second half of 2010, the site will enable people with ALS to self enroll in the registry.

However, the additional $6 million in funding provided by Congress not only will allow the CDC to continue its current efforts, but also potentially conduct more robust data collection at the state and local level in order to identify any cases that are not captured through the web portal and national databases.

For additional information about the National ALS Registry, including about the web portal and how people with ALS will be able to enroll in the registry, please click here.

Thank you to everyone who has contacted Congress and helped to make this victory possible!

Tuesday, December 8, 2009

Year-End Donations

Considering a year-end gift to The ALS Association Greater New York Chapter? This year it's time to give smarter. Here are a few ways to help us before the end of the year:

1) Make a donation online by clicking here or on any of the "donate" buttons around our website.

2) Write a check made out to The ALS Association Greater New York Chapter and mail it to us at 42 Broadway, Suite 1724, New York, NY 10004.

3) Gifts of securities. A growing number of our supporters are taking advantage of contributing gifts of long-term appreciated securities to support the mission of The ALS Association. Click here to learn more.

4) IRA Gift. Consider a gift from your retirement plan. Click here to see how it works.

For more tips to make a smart year end gift click here.

FDA Lifts Ban on Development of Arimoclomol

The Food and Drug Administration (FDA) has lifted a nearly two-year suspension on development of arimoclomol as a treatment for ALS, or Lou Gehrig's disease, according to a report in Associated Press and the company developing the drug, CytRx Corp.

The FDA previously approved a revised clinical trial design for the drug candidate.

In January 2008, the FDA halted arimoclomol studies, citing the need for additional analysis from previously completed animal studies with arimoclomol. In June 2008, CytRx said it would have to conduct more animal toxicology studies on arimoclomol.

Results from the new trial could be available 18 months after the study starts, according to CytRx.

A little information about arimoclomol from the national ALS Association website:

Arimcolomol acts by upregulating heat shock proteins. It is effective in the SOD1 mouse model of ALS even when initiated after the onset of symptoms, and was found to be safe and well tolerated in a previous phase II clinical trial that included patients with sporadic ALS.

Previously, medications that have been found to be effective in the mouse model of ALS have not shown benefit when brought to human clinical trials. Investigators at Emory University in Atlanta and the Massachusetts General Hospital (MGH) in Boston, led by Drs. Michael Benatar and Merit Cudkowicz, believe that the SOD1 mouse model of ALS most closely resembles SOD1-positive familial ALS in human and hence this is the population most likely to benefit from arimcolomol.

Thursday, December 3, 2009

The Spirit of Giving

By Debbie Schlossberg, LMSW

There’s a particular family who comes to clinic. The patient is the matriarch-the proverbial glue that holds the family together. It is a multi-generational household with the patient providing many layers of support for her children and young grandchildren most of whom have medical needs of their own.

I’ve been doing the social work thing with them around issues of housing, finances, and community resources. At her most recent visit, Jane (not her real name) was sharing her feelings of boredom now that her previously active lifestyle is increasingly limited. Jane is proud and independent but when asked pointedly what might enhance her quality of life she replied, “Crafts supplies.”

“Crafts supplies?” I repeated.

She went on to explain that she’s very creative, and still dextrous, but had no money left at the end of the month for supplies. I told her that I’d work on it.

Well, it’s one thing to seek utility assistance or food stamps. But where was I going to find a resource for something like this? I turned to my colleagues at the Chapter office. I sent an office-wide email with my appeal and immediately started to think of a Plan B.

Within one hour my inbox was full of responses:

“Don’t know anything about crafts but would be happy to contribute $25”

“I have bags of unused crafts supplies. Where should I mail it?”

“I’ll start working on a solicitation letter for local merchants.”

“Let’s start a giving tree. We’d all like to help.”

So much for thinking up a Plan B. This was just a few days before Thanksgiving and at the risk of sounding corny, I was overwhelmed with appreciation and reminded that goodness is all around. Sometimes all it takes is the ask.

This year, I gave thanks to my colleagues for giving so much.

Tuesday, December 1, 2009

Celebrating The Holiday Season

While the holiday season is a great opportunity to enjoy yourself and appreciate friends and family, it can also be extremely stress inducing and exhausting. When planning for the holidays, it’s important to take a step back and re-examine past holidays in order to avoid the usual stressors of over-scheduling, over-eating and over-spending.

Make a list of stressors you would like to eliminate or reduce, activities or items you would like to add to this year’s celebrations, and things you can do to bring more peace to the season. After reviewing the list, share it with friends and family so they to can contribute to finding simple ways to put the list into action.

Accept that there are some things you might have done in past years that aren’t as simple to do this year. Utilize the internet and do a majority of your holiday shopping online. If you register at www.igive.com a percentage of each of your purchases will go to The ALS Association Greater New York Chapter. Most websites offer gift wrapping options and your gifts can be delivered right to your (or their) door. Don’t feel pressured to accept invitations to every holiday party. It’s OK to say no especially if it’s for the sake of your well-being. Allow yourself to take a step away from celebrating in order to rest and stay as close to your regular routine as possible.

Use this season to start new holiday traditions with your friends and family. Rather than traveling to see family and friends, invite them to your home in order to avoid the exhaustion and confusion that comes with travel. Instead of taking on all the responsibility of cooking, decorating and setting up for the holidays, invite your guests to contribute by coming earlier and bringing a refreshment each. Don’t hesitate to ask for help if needed.

Most importantly, enjoy yourself. Communicate with the people you are spending the holidays with so this season can be relaxing, peaceful and fun. Don’t put pressure on yourself to keep up or achieve perfection. Live in the moment and have a Happy Holiday.

Monday, November 30, 2009

2010 Medicare Rx Drug Benefit Open Enrollment - November 15 to December 31, 2009

Click here to open the full Medicare Drug Benefit Guide in a printable version. Note: This requires Adobe Acrobat Reader.

The annual open enrollment period for the Medicare prescription drug benefit is underway and will continue from November 15 until December 31, 2009. During this period, those currently enrolled in a Medicare prescription drug plan have an opportunity to switch plans, or they can remain in their current plan. Those who did not enroll in the benefit when they first became eligible for Medicare also may enroll at this time, although these individuals may be subject to a late enrollment penalty.

It is important that PALS who have enrolled in the Medicare drug benefit take the time to review their prescription drug plan options, even if they are satisfied with their current plan. Many plans have made important changes to their benefits for the upcoming year, including changes to monthly premiums, the drugs that are covered or included on the plan formulary, the costs of drugs, coverage in the “donut hole” and other policies that impact access to particular drugs.

In addition, new plans with different options are now available in many areas of the country. Therefore, your current plan may or may not be the best plan for you, so we encourage you to take the time to review your options and find the plan in your area that best meets your needs. And as you review your plan options, we strongly recommend that you evaluate plans taking into account a range of factors, such as coverage policies and your drug needs in addition to monthly premiums.

As we have done every year since the drug benefit was implemented, the Advocacy Department is providing helpful information, including tips and tools, which you can use in selecting a Medicare prescription drug plan. This information includes.

* Riluzole Coverage
* Costs, Coverage & Choices
* Choosing a Prescription Drug Plan
* Extra Help is Available
* 14 Questions and Answers about Open Enrollment
* Information to Have and Questions to Ask
* Report Problems and Successes

Importantly, ALS Association Chapters as well as caregivers and families also can use this information to assist PALS in choosing and enrolling in a Medicare prescription drug plan. These resources will allow people to compare their current plan with other plans and to identify a plan that covers specific drugs, like Riluzole, that are needed by people with ALS. They also include tips on questions to ask when selecting a plan, as well as answers to many of the questions you may have about this year’s open enrollment.

If you have any questions about this information or the Medicare prescription drug benefit, please contact patient services at (800) 672-8857 or email at patient_services@als-ny.org.

Medicare Prescription Drug Information & Resources

Open Enrollment:
Nov. 15 through Dec. 31, 2009

Riluzole Coverage

People with ALS do have coverage for Riluzole through the Medicare prescription drug benefit in 2010. Thanks to The ALS Association’s outreach, the drug has been covered by Medicare plans since the prescription drug benefit was first added to Medicare. However, coverage may vary, including copays and network pharmacies, so it is important to evaluate these factors when deciding on a plan.

It is important to note that Medicare prescription drug plans may not discriminate against beneficiaries on the basis of their medical condition. Because Riluzole is the only drug approved to treat ALS, plans effectively would discriminate against PALS if they denied coverage for the medication. Therefore, if you are unable to identify a plan in your area that covers Riluzole, please contact the Advocacy Department (advocacy@alsa-national.org or 1-877-444-ALSA) so that we can immediately bring this to the attention of the Centers for Medicare and Medicaid Services (CMS) and ensure that you will have access to Riluzole. Please also let us know if your Rx drug plan imposes additional restrictions on coverage for Riluzole, such as higher copays or prior authorization requirements. This feedback is important and will help us to resolve any problems PALS experience accessing the only drug approved for the treatment of ALS.

Costs, Coverage & Choices

Costs and coverage will vary depending on where you live and which plan you select. For example, plans will have different monthly premiums, annual deductibles and copays. There also will be differences in which drugs are covered, the cost of specific drugs, policies related to prior authorization, and choice of pharmacy among other policies. In addition, some plans will pay drug costs during the so-called “coverage gap,” the portion of the standard Medicare drug benefit where you are responsible for paying all costs for your drugs before becoming eligible for catastrophic coverage. Because of the differences in each plan available to you, it is vital that you evaluate your choices to determine which plan best meets your needs.

If you already have Medicare coverage and are satisfied with that coverage, you do not need to do anything in order to maintain coverage. However, we urge you to review your options to make sure you are aware of any changes your current plan may be making in 2010.

Choosing a Prescription Drug Plan

There are several resources, both online and over the telephone, available to assist you in choosing a Medicare prescription drug plan and to compare your plan with others available in your area. They include:

Medicare Website Tools: Available on the Medicare website, www.medicare.gov, are several important on-line tools, including:

* Medicare Prescription Drug Plan Finder. The Plan Finder will allow you to identify plans in your area and to compare your plan with others available to you. Importantly, the Plan Finder will identify which plans cover the drugs you take and includes features that provide you with an estimate of your out of pocket costs for each plan you review, including the costs of specific drugs. Information on estimated monthly mail order drug costs compared to retail drug costs also is available. The Plan Finder also includes ratings of plans based on a number of different factors.
* Formulary Finder: The Formulary Finder enables you to identify plans in your state that cover the drugs you need.
* Lower Your Costs During the Coverage Gap: This section of the site provides tips on how you can lower your out-of-pocket costs, including through assistance program

MyMedicareMatters.org
Another helpful tool that is available to PALS, Chapters, caregivers and family members is www.MyMedicareMatters.org. This web-based decision-making tool is provided by the National Council on Aging and the Access to Benefits Coalition. New to the website this year is a section called, “Review 2010 Choices,” that was created especially for those who have a current Medicare prescription drug plan. This section focuses on why someone should consider changing plans, when it is appropriate to do so and how to pick a new plan. Those who are looking to join a plan for the first time can “Start with 7 Simple Steps,” another feature on the site. This section explains eligibility, how to evaluate current drug coverage, cost, and how to pick a plan. Both sections link to the www.Medicare.gov Prescription Drug Plan Finder and there’s also a downloadable instruction page that outlines how to use the Plan Finder tool. (http://www.mymedicarematters.org/PrescriptionDrugs/Instructions/instructions.asp). Finally, the website includes information on how you may be able to find extra help paying for your prescription drugs.

Medicare Hotline, 1-800-Medicare
Medicare’s toll-free hotline is available to provide answers to questions as well as personalized assistance identifying and reviewing your prescription drug plan options.

Medicare & You 2010
Information about the Medicare program, including the prescription drug benefit, can be found in the 2010 edition of the Medicare & You handbook, which was mailed to all Medicare beneficiaries in October, 2009. The handbook also is available online at www.medicare.gov. The handbook includes tips on selecting a plan and an overview of plan options. Those who already are enrolled in a Medicare drug plan also should have received an Annual Notice of Change that describes any changes in the benefits offered by your current plan.

State Health Insurance Assistance Program (SHIP)
Each State has a State Health Insurance Assistance Program that offers free one-on-one counseling to PALS and other Medicare beneficiaries and their families. To find the SHIP office near you, go to www.shiptalk.org.

MAPRx
Medicare Access for Patients Rx, MAPRx, is a coalition of patient, family caregiver and health professional organizations committed to safeguarding the well-being of patients with chronic diseases and disabilities under the Medicare prescription drug benefit. The ALS Association has worked with the coalition; and the MAPRx website, www.maprx.info, includes helpful information and answers to questions. It also includes a list of resources to turn to in your state for assistance.

MyMedicareCommunity.org
Another helpful site available from the National Council on Aging and the Access to Benefits Coalition is www.mymedicarecommunity.org. The site is designed for professionals and volunteers who work with people with Medicare. Resources include articles, news items, calendars and easy-to-access Medicare references, including regulations and policy guidance from such sources as the Centers for Medicare & Medicaid Services (CMS), the Social Security Administration (SSA) and the Administration on Aging (AoA). A separate “forum” gives users the opportunity to ask questions, share ideas and promising practices, and try to help each other solve problems.

Extra Help is Available

Extra Help in paying for Medicare prescription drug costs is available for those with limited incomes, including through the Social Security Administration and other public and private sources.

Social Security
Under the Medicare Prescription Drug benefit, you may be eligible for the Extra Help program to pay for all or most of the premiums, annual deductible and copayments. You automatically qualify for Extra Help if you receive Supplemental Security Income (SSI) and have Medicare; receive Medicaid and have Medicare; OR your state pays your Medicare premiums. You also may qualify and can apply for Extra Help through the Social Security Administration (SSA), www.ssa.gov. In general, a person with Medicare may qualify for Extra Help if:

* Annual income is less than $16,245 for a single person or less than $21,855 for a married couple living together. Slightly higher income limits apply if you receive financial support from other relatives living in your household, if you receive earnings from work, or if you reside in Hawaii or Alaska.
o Social Security does not count the following as income: food stamp assistance; home energy assistance; medical treatment and drugs; housing assistance; disaster assistance; earned income tax credit payments; victim’s compensation; scholarships and education assistance
* In order to qualify for Extra Help, your total resources or assets, such as savings accounts or investments, must be limited to $12,510 for a single person or $25,010 for a married couple living together. SSA does not count a person’s house or car as resources.

Even if your income or assets are slightly higher than the limits listed above, you should still apply for Extra Help. The Social Security Administration allows other deductions that may make you eligible for Extra Help. and select the section on Medicare at the top of the page to see if you are eligible for Extra Help. Additional information also is available here: http://www.ssa.gov/pubs/10115.html.

BenefitsCheckup.org
This online tool (www.benefitscheckup.org) is a service of the National Council on Aging and will allow you to search for private and public programs that can help you pay for prescription drugs and other health care costs.

Pharmaceutical Assistance Programs
Many pharmaceutical manufacturers offer assistance programs for people enrolled in the Medicare Drug benefit (and for those who are not enrolled).

* Partnership for Prescription Assistance. Another coalition of pharmaceutical companies, providers and charitable organizations, the Partnership for Prescription Assistance (www.PPARx.org) offers a single point of access to more than 475 public and private patient assistance programs, including programs that offer assistance with Rilutek.
* Medicare Pharmaceutical Assistance Program Site: visit http://www.medicare.gov/pap/index.asp, to search manufacturer assistance programs by drug name.
* TogetherRxAccess.com: This coalition of drug makers provides assistance for drugs used by people with ALS. Visit www.TogetherRxAccess.com.
* State Pharmaceutical Assistance Programs: At least 23 states offer assistance with paying drug plan premiums and/or other drug costs. To learn if your state has a program, visit http://www.medicare.gov/spap.asp.

NOTE: Assistance programs have eligibility requirements (eg, in addition to income/resource limits, some are not available to those who are eligible for Medicare)

Frequently Asked Questions and Answers for the 2010 Medicare Drug Open Enrollment and Four Questions You May Have After Enrollment

The ALS Association once again has joined as member of MAPx (Medicare Access for Patients Rx) to provide answers to several important questions you may have about the Medicare Drug benefit as well as questions you may have after enrolling in a Medicare drug plan. A printable brochure can be found here:

http://www.maprx.info/pdf/9195_MAPrx_Open_2009.pdf

1. Will my Medicare prescription drug plan be the same in 2010 as it was in 2009?
Probably not. Almost all Medicare Part D plans will change in 20109. Use this open enrollment time to compare plans and find the plan that best meets your prescription drug needs at a cost you can afford.

2. How may my plan change in 2010?

Your current plan may have changed:

* monthly premium;
* annual deductible
* your share of the costs (copayment or coinsurance);
* the list of drugs it covers (formulary);
* coverage, if any, it offers in the coverage gap; and/or
* use of policies that may restrict access to certain drugs, such as:
o requires your doctor to justify why you need a certain drug before the plan will pay for it (called prior authorization);
o requires your doctor to prescribe a cheaper drug in the same class of drugs first (called step therapy); and/or
o only lets you buy a certain amount of a drug at a time (called quantity limits).

Your plan may also decide not to participate in 2010. If that is case, your plan sent you a letter in early October explaining that you will need to select a new plan. You can pick a new plan between October 2009 and January 2010 as part of a Special Enrollment Period.

3. How do I know what changes my plan is making for 2010?

You should have received a letter from your current plan called an “Annual Notice of Change” by October 31. This letter explains some of the important changes to your plan, including changes to the premium, the drugs covered (formulary), the cost of the drugs, and any restrictions used that limit the access to drugs. If you did not receive the Annual Notice of Change letter, call your plan immediately.

While very important, this letter probably does not have all the details you need to determine if your current plan is the best plan for you in 2010. You also need to know how these changes apply to the drugs you use. You can find this information by looking on the plan’s Web site or in the Medicare Prescription Drug Plan Finder at www.medicare.gov or by calling the plan or 1-800-MEDICARE; (1-800-633-4227 / TTY: 1-877-486-2048).

You may have received a summary of the formulary with the Annual Notice of Change letter. If you did not receive a copy of the formulary, call the plan and they will send you a copy or tell you if your drugs are covered. The phone number for the plan’s customer service department is included in the Annual Notice of Change letter you received. You may also get information about the formulary from the plan’s website, by using the Medicare Prescription Drug Plan Finder at www.medicare.gov, or by calling 1-800-MEDICARE (TTY: 1-877-486-2048).

4. Should I compare my plan with others available in my area in 2009?

Yes, this is very important to do. Other plans may provide you with better or less costly coverage for the drugs you need. Often the single most important factor in choosing a plan is comparing the drugs you take to the plan’s formulary. The lack of coverage for one drug for a chronic condition can be the most important factor in terms of what your drug costs will be. The best way to compare your current plan with other plans is to use the Medicare Prescription Drug Plan Finder at www.medicare.gov -in the Prescription Drug Plans box, click on “Compare.” The Plan Finder will allow you to see the estimated costs for your current plan in 2010 and to compare those costs with other plans in your area. Estimates are based on drug prices on the date you compare plans; your actual out-of-pocket costs may varyDrug Plans box, click on “Compare.” The Plan Finder will allow you to see the estimated costs for your current plan in 2009 and to compare those costs with other plans in your area. Estimates are based on drug prices on the date you compare plans; your actual out-of-pocket costs may vary.

An important feature on the Plan Finder is an estimate of your total monthly costs over a 12-month period for each of the plans that you are considering. If you have entered the drugs you take, this information appears in a chart near the bottom of each plan’s Plan Drug Details page in a section titled Total Monthly Cost Estimator. Click on the name of your current plan to pull up the Plan Drug Details page.

5. What does it mean if a plan offers “coverage in the gap”?

The coverage gap is also called the “donut hole.” The coverage gap is a period during which you have to pay all the costs for your drugs AND continue to pay your monthly premium to keep your coverage.

  • The coverage gap begins after you and the plan together have spent a certain amount (no more than $2,830) on drugs that are included in the plan’s formulary and bought at a pharmacy in the plan’s network.
  • The coverage gap ends after you and your plan together have spent $6,440 in total drug costs paid. This amount includes the $3,610 that you spend on drug costs during the coverage gap. Only money spent on drugs on the plan's formulary that are bought at a pharmacy in the plan's network counts toward the coverage gap totals. After $6,440 has been spent, you qualify for catastrophic coverage—at which time you will pay only your monthly premium and up to 5% of your drug costs. [See http://www.maprx.info/pdf/MAPRx_Open_Enrollment_QAs_2008_Post.pdf.]
  • None of these amounts include what you spend on your monthly premiums.

Some plans provide coverage in the coverage gap, but most do not. In 2010, this means that such a plan will continue to provide some coverage for generic drugs during the coverage gap. Plans with coverage in the gap for generics are available in every state. Before enrolling in a plan with coverage during the gap, it is important to check with the plan to make certain the drugs you need are covered during the gap. The Plan Drug Details page on the Plan Finder will show your estimated monthly costs for each plan you are considering, how those costs will or will not change during the coverage gap, and by how much. Plans with coverage in the gap may charge a higher monthly premium.

Depending on your prescription drug needs, plans with coverage in the coverage gap may not save you money and may end up costing you more due to higher premiums and cost sharing.

If you get Extra Help (low-income subsidy) paying your drug costs, you won’t have a coverage gap. However, you will have to pay a small co-payment or coinsurance amount for each prescription until you reach catastrophic coverage.

6. What happens if a drug I take is not on a plan’s formulary?

You must pay the full cost for any drug not on the formulary. The money you pay for these drugs does not count toward the total amount that you must spend to qualify for catastrophic coverage. That is why it is important to make sure that your drugs, especially the most expensive ones, are on the formulary of the plan you select. You, your authorized representative or your doctor can ask for a “coverage determination” (exception) to get your plan to cover a drug when it is not on the plan’s formulary. See question #3 in the next section of this document for more details.

7. What do I have to do if I decide that I want to stay in my current plan for 2010?

Nothing. You will stay enrolled in your current plan unless you sign up for a new plan.

8. If I decide to change plans, how and when should I do it?

You can enroll in a new plan by contacting the plan you want to enroll in or by calling 1-800-MEDICARE (1-800-633-4227 / TTY: 1-877-486-2048) or by visiting www.medicare.gov.

You can change your plan for 2010 by enrolling in a new plan between November 15 and December 31, 2009. However, it is best to make the change as early as possible to ensure that you can get the prescriptions you need without delay on January 1, 2010. There is no fee for changing to a new plan. Do not disenroll from your 2009 plan if you enroll in a new plan for 2010. You will automatically be disenrolled from your 2009 plan when you enroll in a new plan for 2009. (On page 4 here, http://www.maprx.info/pdf/9195_MAPrx_Open_2009.pdf, is a chart on the Enrollment Period and Options)

9. If I'm in a Medicare Advantage Plan with drug coverage, but am not happy with the health coverage, can I drop my Medicare Advantage Plan and return to Original Medicare by itself and add a drug plan?

Yes, you can switch plans during the Part D Open Enrollment Period from November 15 through December 31, 2009.

You can also switch plans during the Medicare Advantage Open Enrollment Period from January 1 through March 31, 2010. During this period you can switch from your Medicare Advantage plan with drug coverage to the Original Medicare Plan but you must also join a separate stand-alone drug plan. The booklet Medicare & You 2010 has important information about Medigap protections for people switching from Medicare Advantage plans to Original Medicare.

10. What if I change plans, but find that I don’t like my new plan?

In general, you can only switch to another plan from November 15 to December 31 each year. However, there are a few special exceptions, such as if you move out of the service area, lose your employer drug coverage, enter or leave a nursing facility, or if you qualify for Extra Help. That is why it is so important to review your options before enrolling.

11. If I previously applied and qualified for Extra Help (Low-Income Subsidy), do I qualify in 2009?

If you applied and qualified for Extra Help at any time and are receiving Extra Help now, Social Security may have contacted you to review your eligibility status for 2010. In late August 2009, Social Security mailed letters to people who were selected for review and included a form to complete called “Social Security Administration Review of Your Eligibility for Extra Help” (Form SSA-1026).You had 30 days to complete and return this form. Any changes in the amount of Extra Help you will receive will be effective in January 2010.

If you qualified for Extra Help in 2009, but were not selected for a review, you will not receive a form from Social Security and there should be no change in the amount of Extra Help you receive. If you are unsure of your Extra Help status, call 1-800-MEDICARE (TTY: 1-877-486-2048).

If you have been notified by Social Security that you are no longer eligible for Extra Help in 2010, you will still be enrolled in your plan. After January 1, 2010, you will have to pay monthly premiums and your share of the drug costs. However, during a one-time Special Open Enrollment period, you can change Part D plans between January 1 and March 31, 2010. This will be an important opportunity for you to change to a new plan if you find that your existing plan is not your best option.

11b. If I automatically qualified for Extra Help in 2009, will I qualify in 2010?

If you automatically qualified for Extra Help in 2009 you will continue to automatically qualify in 2010 if you:

  • Receive both Medicare and Medicaid;
  • Have your Medicare Part B premiums paid by your state because you belong to a Medicare Savings Program; or
  • Receive both Medicare and Supplemental Security Income (SSI).

Medicare beneficiaries who automatically qualified in 2009, but who will not automatically qualify in 2010, should have received a notice on grey paper from Medicare [CMS Publication No. 11198] in September 2009.

The notice explains why you no longer automatically qualify and will encourage you to complete an enclosed Social Security application for Extra Help as soon as possible. The application for Extra Help should be returned to Social Security in the postage paid envelope provided.

12. Have the rules for Extra Help changed in 2010?

Yes. Social Security will no longer count life insurance you have as a resource when deciding if you qualify for Extra Help. They will also not count help you receive from others with your household expenses to decide if you get Extra Help.

You should know though that some states may still count life insurance and the help you receive from others to decide if you are eligible for your state’s Medicare Savings Programs (MSP). These programs can help pay for your Medicare Part B premiums and other Medicare costs.

If you applied for Extra Help in the past and were turned down because your income or savings were too high, these changes mean that you may be able to get Extra Help in 2010 if you apply again after January 1, 2010. Call 1-800-772-1213 or visit www.socialsecurity.gov or www.benefitscheckup.org.

If you apply for Extra Help, Social Security will send the information to your state’s Medicaid agency to start the process for getting you into your state’s MSP. If you do not want your information to go to the state, there is a box you can check on the application for Extra Help.

13. If I received Extra Help in 2009 and qualify again in 2010, will my drug costs change?

Probably yes. You will have an increase in drug co-payments of no more than 30 cents per prescription. In addition, the co-payment levels for some individuals will increase or decrease as a result of a change in their income or assets, or if they enter or leave a nursing facility or other institution.

If you continue to automatically qualify for Extra Help but your co-payment levels are changing in 2009, you should have received a letter on orange paper from Medicare [CMS Publication No. 11199] in early October telling you your new co-payment amounts.

14. What if I did not join a Medicare Part D plan when I was first eligible, but I would like to join one now?

You can enroll in a plan during Open Enrollment. You may have to pay a premium penalty if you did not have coverage that is at least as good as Medicare’s coverage (“creditable coverage”) during the first/initial period that you were eligible to enroll. The penalty amount is calculated based on the number months you were eligible but did not enroll. If you have to pay a premium penalty, most people will have to pay it for the rest of their life. The penalty will be added to your monthly Medicare private Part D plan premium.

If you qualify for Extra Help with your Medicare prescription drug coverage, you can enroll anytime and pay no late enrollment penalty.

15. Can I get free help to make decisions about Medicare prescription drug plans?

Yes. Every state has a State Health Insurance Assistance Program (SHIP) that offers free one-on-one counseling and assistance to people with Medicare and their families. SHIP offices are located throughout each state. To find contact information for the SHIP offices closest to your community, visit www.shiptalk.org or call 1-800-MEDICARE (1-800-633-4227 / TTY: 1-877-486-2048) for assistance.

Questions You May Have After Enrollment

1. I enrolled in a Part D plan but I haven’t heard anything. Is this normal?

No. You should have received a welcome letter and a prescription card from the plan. Contact the plan right away to confirm that you are enrolled.

2. I enrolled in a drug plan in December and got a letter welcoming me into the plan, but nothing else. I have nothing to show the pharmacist. How can I get prescriptions filled without a card?

Contact your plan immediately. If you need to get your prescription filled before your card arrives, bring the letter you received from the plan that confirms you have enrolled with you to the pharmacy. If you don't have a letter, ask your pharmacist to call 1-800-MEDICARE (TTY: 1-877-486-2048).The customer service representative should be able to tell the pharmacist which plan you are enrolled in. If you continue to have problems, you should contact your local SHIP office. You can locate your local SHIP office by visiting www.shiptalk.org or by calling 1-800-MEDICARE (TTY: 1-877-486-2048).

3. Will my plan cover a drug that I need to take even if it is not on their formulary?

Maybe. You, your authorized representative or your doctor can ask for a “coverage determination” (exception) to get your plan to cover a drug when it is not on the plan’s formulary. Your plan can tell you how to do this. Your doctor can help you with some steps in the process. The plan must decide within 72 hours (or 24 hours for an expedited review) if they will cover the drug. If they decide not to cover the drug, they must send you a written notice. You also have a right to appeal their decision.

Note: If your drug is not on the formulary, but you are able to get it covered by the plan under the plan’s exceptions process, the money you spend on the drug is counted toward qualifying for catastrophic coverage. [See question #5 above.]

4. I am having problems with my old Part D plan. I have enrolled in a new Part D plan but my old plan still deducts a premium and it has been doing this for months now. I have called the old plan several times but I still can’t resolve the problem. What should I do?

Report billing errors to 1-800-MEDICARE (TTY: 1-877-486-2048) as well as to the plan. Since your plan has not stopped billing you after you notified it of the error, you may wish to file a complaint (grievance). Ask the plan’s customer service representative to send you a complaint form or tell you how to find one on the plan’s website. You can also file a complaint (grievance) with Medicare by calling 1-800-MEDICARE.

Information to Have and Questions to Ask

Regardless of whether people use the internet or more traditional means to identify a prescription drug plan, they should approach the process armed with important information and key questions to ask. CMS has available a helpful document that provide suggestions on issues to think about when comparing plans (http://www.medicare.gov/Publications/Pubs/pdf/11163.pdf). In addition, we have included below other information to consider when people review their options. But please remember that people should compare their current coverage to the new options that are available.

ALS Association Chapters may want to customize the information below to include any other questions PALS may want to consider as they go through the decision-making process.

General Information to Have On Hand When Choosing a Medicare Drug Plan:

1. Your Medicare Card, including Medicare number,
2. General information on your current prescription drug coverage,
3. Information on annual income and resources (to determine if you qualify for extra help).
4. A list of medications you take, including dosage.
5. The name of pharmacies you use.

Information to Consider:

The amount of the monthly premium

Whether the plan formulary includes

The particular drugs needed

The strengths and dosages of the drugs needed

The number of days covered in each prescription (Example: 30, 60, 90 days)

Whether the pharmacies in the plan’s network include:

The pharmacies used by the beneficiary

The pharmacy used by the long-term care facility in which the beneficiary resides

Whether there are price differentials among pharmacies in the network
Whether mail-order is allowed or required
The price differential for mail order
The number of days covered in each prescription (Example: 30, 60, 90 days)
The plan’s utilization management tools
The prior authorization requirements
Whether the plan requires step therapy (Requirement that certain medication(s) be tried before those prescribed by the patient’s physician)
Whether the plan uses tiered cost sharing (Different co-pays for generics, brands, or for specific drugs)
The number of tiers
The co-payments/co-insurance per tier
Whether the plan offers therapeutic substitutions
Whether there are quantity limitations
On number of prescriptions in a month
On number of pills in a prescription
Whether the plan offers supplemental benefits
How the plan coordinates with the State Pharmaceutical Assistance Program
Who is the plan sponsor, has the entity been in the community for a while, is it reliable?
The “Transition” process used by the Prescription Drug Plan (Temporary use of a drug not covered by plan)
The “Exceptions” process used by the Prescription Drug Plan (Appeal if a person’s drug is not covered by the plan)
Whether a PALS has other insurance that covers prescription drugs:
Through a Medicare HMO or other Medicare Advantage plan. If so, the person must keep getting drug coverage through that plan if he wants to stay in that plan.
Through a retiree health plan. If so, has the former employer told the person whether the insurance is as good as or better than Medicare's coverage (i.e., "creditable coverage”)? If it is creditable coverage, the person may stay in that plan without getting a late penalty on the premium if he later decides to change to a Medicare drug plan.
Through a Medigap (Medicare supplemental) policy? If so, has the insurer told the person whether the insurance is creditable coverage? If it is not, the person will have to pay a late penalty on the premium if he keeps his Medigap drug coverage and later switches to a Medicare prescription drug plan.
Individuals with coverage through the Veteran's Administration, TRICARE, Federal Employee Health Benefit Plan, Railroad Retirement Board, Program of All-Inclusive Care for the Elderly (PACE), or Indian Health Service, may continue receiving prescription drug coverage through one of those plans if that coverage is as good as what is offered from Medicare prescription drug coverage.

Report Problems....And Successes

It is extremely important that you contact the Advocacy Department (advocacy@alsa-national.org or 1-877-444-ALSA) if you experience any problems or difficulties with your Medicare drug coverage, either during the enrollment process or with the coverage itself, after you enroll. For example, please let us know if you do not have a choice of plans that cover Riluzole or other drugs you and other PALS frequently need. Also let us know if your plan restricts access to these drugs, requiring you to first try another drug or pay a higher copay because the drug is not on the plan’s formulary or list of preferred drugs.

Your feedback is essential and will help us to communicate concerns to CMS and Congress and resolve problems that PALS may experience. We also want to know if you have had a positive experience with the drug benefit, including whether the benefit reduced your out-of-pocket drug costs or enabled you to access drugs for which you did not have prior coverage. Again, we want to communicate these successes to CMS and Congress so that they know what works and what types of policies are benefiting people with ALS.

Wednesday, November 25, 2009

New York Chapter Thanksgiving Program

As part of The ALS Association Greater New York Chapter’s annual Thanksgiving Program seen here is volunteer Christian Hespe delivering a Holiday basket to caregiver Susan Turin from New Hyde Park, LI. The program is offered to help ease some of the stress that comes with the holidays for PALS and their families. This year we are happy to say we were able to donate a family meal and a gift basket to 8 families.


Robert(PALS)and son Daniel happily share the visit
as volunteer, Christian Hespe, delivers a holiday basket.

Friday, November 20, 2009

Smoking May Now be Considered an Established Risk Factor for ALS

While previous studies have indicated a “probable” connection between smoking and ALS, a new study published in the Nov. 17, 2009 issue of Neurology®, the medical journal of the American Academy of Neurology, states that smoking may now be considered an “established” risk factor for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.

The findings come from Baystate Medical Center neurologist Dr. Carmel Armon, an ALS researcher and neuroepidemiologist, who came to this conclusion using evidence-based methods to perform a rigorous analysis of studies examining the link between smoking and developing ALS -- a fatal neurodegenerative disease affecting the motor nerves and the voluntary muscles.

Prior to this report, no external factors have been implicated with this level of confidence as contributing to the occurrence of sporadic ALS.

“Application of evidence-based methods separates better-designed studies from studies with limitations that may not be relied on. The better-designed studies show consistently that smoking increases the risk of developing ALS, with some findings suggesting that smoking may be implicated directly in causing the disease,” said Dr. Armon, a professor of neurology at Tufts University School of Medicine and chief of neurology at Baystate Medical Center in Springfield. He is also a fellow of the American Academy of Neurology.

According to Dr. Armon, identifying smoking as an established risk factor for ALS has three implications.

“First and foremost the findings provide a link between the environment and the occurrence of ALS, where none had been previously identified with this level of certainty,” said Dr. Armon.

“Additional implications are that since smoking has no redeeming features, avoidance of smoking may reduce the occurrence of ALS in the future, and since some of the mechanisms by which smoking causes other diseases in humans are understood fairly well, recognizing its role in the occurrence of ALS may help pinpoint the biological processes that initiate the disease,” added the researcher.

The Baystate Medical Center neurologist noted that focusing on processes at initiation of sporadic ALS, and close to it, may provide new avenues to treatment to stop its progression.

“This has been realized in some animal models of familial ALS, but not in humans. The hope that these concepts may apply to sporadic disease and change its outlook in the future is supported by establishing the association of smoking with ALS occurrence,” concluded Dr. Armon.

ALS takes the lives of half of those affected within three years of onset of weakness, with less than five percent surviving more than 10 years. Some 90-95 percent of cases appear to occur at random (“sporadic cases’), with 5-10 percent of cases having an affected blood relative (“familial cases”). An altered gene, several of which have been identified, is implicated in causing familial ALS.

Wednesday, November 4, 2009

PS 189 Walks for ALS

By Allison Lardner, Walk Manager

On Friday, October 23rd, 2009, the fourth and fifth graders at PS 189 in Manhattan kicked off their inaugural “PS 189 Walks for ALS.” Led by their art teacher, Mary Lambros (who is also the captain of Team Lambros on Long Island), the school ran a three-week long campaign to promote awareness of ALS and raise money to help find a cure. Each homeroom was a “team” and there was a competition for both the highest fundraising homeroom and the top three fundraising individuals. They raised nearly $1,000 and plan to make it annual event.

Thanks PS 189!!

Below enjoy some pictures from the PS 189 Walk.

Recognizing Depression

By Debbie Schlossberg, LMSW

A topic of frequent discussion with PALS and CALS is depression. It almost always comes up at some point in our meetings, either because I inquire or because the PALS/CALS initiates the conversation.

As a matter of fact, I’ve been asked countless times, “Wouldn’t anybody be depressed in this situation?” So it seems there is a widespread belief that depression is a natural reaction to the reality of living with ALS. I’ve been giving this idea much thought and although I don’t want to refute the essence of it (that ALS is often devastating), I have to wonder what, if any, lessons, can be learned from the assumption that actual depression is a universal reaction to a demanding life challenge. What about people we’ve met who don’t seem to be depressed? We know them- the super-copers or people of such enviable faith that they always seem to have a smile on their face. I know that they, too, have their moments, their days, their tears. It does not mean that they are depressed per se, but then perhaps, many of the other PALS who suspect depression may not be really depressed either. Can’t one have moments, days, tears, without labeling oneself as depressed? I don’t think there is an immunity that some people have. Conversely, there are factors which may predispose some of us more than others. Some of the most common “risk factors’ are previous episodes of depression, depression in the family, and substance abuse.

Clinical depression is a complex condition. The symptoms I tend to look for- sleep and eating changes, withdrawal or mood changes, fatigue, can all be physiological effects of ALS. And where does one begin and one end? So even if it sounds like an overused cliché, it really is important to self-assess carefully and to discuss with a care provider for further assessment.

Then, of course the question becomes what to do. I know our docs are very amenable to prescribing anti-depressants when indicated and sometimes they really do help. But sometimes they don’t. And I tell myself that this makes sense. Meds have efficacy in terms of perhaps giving a person a sense that their load is lighter or help with some of the aforementioned symptoms. But it doesn’t take away the trigger for the depression, nor does it help the sufferer learn new ways of coping. That is why study after study show that the best results for treatment of depression come from a combination of medication and psychotherapeutic counseling. Our PALS and CALS often have so much on their plates that the idea of committing to counseling feels like just another task to take up precious time and money. But the rewards can be great: the negative thinking diminishes, sleep patterns improve, and slowly people re-engage in life around them.

So what have my musings taught me? Sadness is not always depression-true depression is not a universal reaction, but if one suspects that they may be clinically depressed, it is important to explore it fully with a trained professional (docs, nurses, or social workers at your ALS clinics) and then aim to treat it with a combination of medication and counseling.

Friday, October 30, 2009

Happy Boo-Day

By Ruth Louison

Ghoulies and ghosties, and three-legged beasties, and things that go “bump” in the night. Here comes Halloween, everyone – adorable children dressed up as fairies and super heroes, monsters and skeletons, carrying bags filled with candy.


Halloween was always fun for me. As a child I dressed up with my sister and my friends and roamed the halls of the huge apartment building in Brooklyn where we lived (and where I live today). My parents couldn’t afford store-bought costumes so I typically wore one of my father’s suit jackets, an old shirt, one of his hats, smeared cigarette ashes on my face and tied a bundle of rags to one of Mom’s brooms. Voila, a hobo! As an adult I have carried my love for Halloween into the workplace. I always wear Groucho glasses at work, and keep a large Halloween bowl filled with candy for all to enjoy.

The best Halloween I have ever experienced took place in 1988. It was the day I became a grandmother for the first time. My ex-son in law called me at 6 a.m. that day and told me that my daughter, Barbara, was having contractions. “Did you call the doctor?” I asked. He said that he hadn’t. I suggested he do that. A few minutes later he called me back and said the doctor had told them to have Barb walk around the house for a while. If the contractions stopped they could assume she was not in labor. “Did you do that?” I asked. He said that he hadn’t. I suggested he do that. The next phone call was to tell me that the contractions hadn’t stopped. He called the doctor and sent a friend to pick me up at my house so that we could all go to the hospital together. I was about to become a grandmother.

His friend arrived about 20 minutes later. I grabbed my purse and my Groucho glasses and we were on our way. I put the glasses on as I walked into their apartment. My daughter was not amused. On the way to the hospital, with Barb’s contractions coming fast and furious, we were pulled over by a police officer for speeding. We were all trying to explain to him that we had a woman in labor in the car, and that if he didn’t let us go he would have to deliver the baby himself. He insisted on seeing her, then without an offer of an escort he let us go.

We arrived at the hospital just in time. As soon as Barb got out of the car, her water broke. My son in law ran into the hospital and emerged a few minutes later pushing a wheelchair while being chased by a very angry security guard. We got Barb into the chair and into the hospital. I proceeded to the waiting room, Groucho glasses on my face. Doctors and nurses walked by wearing witch hats and Domino masks and waved as they passed me. After about an hour my son in law floated into the waiting room and announced that Heather Lynn had been born and was beautiful (well, of course she was beautiful, she was my grandchild). The whole time I was in the waiting room I was very calm. When told that Heather had been born I started phoning family and friends. I was fully unprepared, however, for the emotional tsunami that washed over me when I saw her tiny face for the first time. The circle was complete. Suddenly I understood my mother and my grandmother, and probably all the generations before them.

When Heather was 8 months old she was diagnosed with leukemia. My world was rocked beyond words. Her doctors gave her a 30% chance of surviving to her first birthday and little or no chance of making it to age two. We saw her through chemotherapy treatments, bone marrow extractions and infections. I brought a rocking chair and a pair of Groucho glasses to the hospital and would rock her for hours. The glasses made her laugh and we would take turns putting them on. For her first birthday we threw a huge costume party for family and friends, silently hoping that there would be many more birthdays. Time passed and with the exception of one week when her doctors feared she was out of remission, her treatment was uneventful. At the age of four, Heather was pronounced cured. Naturally every time she complains of a sore throat I panic a bit, but she is fine. This year we will celebrate her 21st birthday. She has grown to be a beautiful, funny, intelligent woman who will go on to do great things with her life.

On Halloween this year as always I will wear Groucho glasses and drink a toast to my beautiful granddaughter. This year she will (at long last, she says) be old enough to join me in that toast. Happy Boo-Day, Heather darling. I love you.

You can visit Ruth at www.oldcarmama.com

Ruth Louison, 63, used to work as a Human Resource Generalist at a local City hospital. Ruth is married with one daughter, two stepchildren and five grandchildren. She's addicted to writing short fiction, baseball (sorry, but she's not a Yankee fan), street rods and drag racing. Ruth was diagnosed with Progressive Muscular Atrophy, which is the fraternal twin of ALS, in March of 2009.

Thursday, October 29, 2009

Murphy Golf Outing In Honor of Gaston LaPerche

By Lon S. Cohen (Staff Writer)

On September 26, 2009, a beautiful autumn day, the Murphy clan set out with seventy or so golfers on the grounds of the Pehquenakonck Country Club in North Salem, NY for their annual Golf Tournament. What began 21 years ago as a gathering of friends, relatives and business partners of Jim Murphy for a fun day of golf, has grown over the years into what is now dubbed the Murphy Master’s Golf Tournament. As the years passed and the event grew in proportion, Jim Murphy thought he could put his connections to good use.

“I took a look around and thought, we’ve got a lot of people here,” he said. “We can do some good.”

That’s when, about ten years ago, Jim Murphy decided that the annual tournament would donate proceeds from the day to a different charity or person in need every year. Over the years the beneficiaries were diverse: from a particular player’s favorite charities like helping the homeless to the personal needs of someone close to the golfing group who was ill. And of course there was the outing that went to benefit the victims of 9/11.

This year, The ALS Association Greater New York Chapter was selected as the beneficiary. John LaPerche, a long time golfer, and childhood friend of Jim’s brother, Chris, suggested ALS in honor of his father, Gaston LaPerche. Mr. LaPerche had been diagnosed with ALS and he wanted to give back to the organization that had been helping out the family with patient services.

“I received two calls,” said Jennifer Lowy, Director of Marketing and Special Events for the chapter. “One was to tell us they were doing the tournament to benefit our organization and another to tell me they’d like to come in and give us the donations.”

Because the Murphy family had been organizing this event for so many years they required absolutely no assistance from the organization. From the twelve noon shotgun start to the dinner Jim and his entire family pitch in together to help make the event happen, from making some of the food to organizing the auction. The family affair looks to continue on for years to come as Jim’s children are trying to do a little more each year to take over the event.

The ALS Association Greater New York Chapter wishes to extend its thanks to the Murphy and LaPerche families for thinking of us this year.

It is with great sadness that we announce that on October 14, 2009, Mr. Gaston LaPerche lost his fight with ALS.

Wednesday, October 28, 2009

The Walk to Defeat ALS Focus On J.J.’s Clan

By Claire Stagg

Our family became aware of ALS 18 years ago, when my grandfather, Joe Corso (aka JJ ) was suffering from pain in his leg. After many doctor visits, he was given the diagnosis of Lou Gehrig’s disease. One of the first reactions he had was “ I never played baseball!” During the seven years that he suffered from ALS we watched this very strong, vital man, who had spent his entire life taking care of his family, now have to become totally dependant on us.

As he slowly began to lose the use of his legs and arms, we were all amazed at how brave and happy he remained with his life. As his family, we were heartbroken watching this person, who had spent his entire life taking care of six children and taking the place of a father to his grandchildren who had lost their father, fight this battle. But never during this time did he ask “Why Me?” He was always determined to walk again and hope to live till 100. During his illness he continued to be optimistic, he loved to go out to lunch and was always asking someone to take him out. He loved his motorized wheelchair, even though you had to get out of his way when he was driving it - he was a menace! He was the love of our lives and we miss him every day.

The last days of his life were spent waiting for the birth of his great-granddaughter Emma. He knew she was born but the next day he lost his fight and left us for good. It is that very same great-granddaughter that has spent the last 3 years Walking to Defeat ALS in Saddle Brook, NJ. She had always heard of Papa Joe and when she saw the opportunity to make people aware she jumped at the chance.

We started a family team called JJ’s Clan and the first year had a team of 22 walkers. Our first year we created t-shirts by using a collage of JJ's photos and each one showed the great smile that was always on his face. We reached out to family and friends as well as business contacts and for the last 3 years have raised over $5,000 a year! Emma has continued to raise awareness by putting cans on the counter of many businesses, as well as trying to get the student council in her school to sell baseballs. She has also written letters to everyone of her teachers asking for their support.

We will continue to support the efforts of The ALS Association Greater New York Chapter in the years to come.

To donate to JJ's Clan Walk to Defeat ALS Team please click here.

Tuesday, October 27, 2009

Caregiving: Will You Sink Or Swim As A Caregiver?

By Debbie Schlossberg, LMSW

“When people confront an ocean of need, they feel anxiety. Some run for their lives; others jump in and drown. Both reactions are rooted in the inability to stay separate and set limits in a healthy way that balances generosity with self-preservation.” - Roberta Satow, Chair, Dept. of Sociology, Brooklyn College.

“Balancing generosity and self-preservation” is an interesting lens from which to view a caregiver’s dilemma. One end of the spectrum is the inclination to give all of oneself in an attempt to take away our loved one’s distress, to prove the extent of our love. At the other, the inability to face this formidable foe—to turn away and not offer ourselves as much as we should Both are extremes in equally futile attempts to erase the reality of ALS. Most caregivers are able to swim somewhere in the middle but there is always the pull of the tide, the guilt for not ‘jumping in” more. Occasionally the undertow of responsibility is too great for us to bear and it compels us to run away more than is healthy or safe.

So how do you find and keep this steady stroke? How do you keep your head above water without tiring out?

Some caregivers have difficulty describing their coping skills. They view them as a natural aspect of who they are and how they operate. Others can enumerate specific tools. What I’ve observed is that there are certain traits caregivers possess that enable them to attain and maintain this balance:

1) Caregivers who maintain balance are caregivers who set limits. They’re able to take stock of who they are: their strengths and capabilities as well as areas where they have perhaps always tended to seek assistance. With this self-knowledge they construct boundaries. They work to do the best they can within these contours and get help for the rest. By doing this, they minimize the potential anger, resentment, and emotional and physical depletion that can come from striving to meet a bar set too high.

2) They are often good communicators. When faced with a task too great, they know how to say, “I really wish I could do this. But I can’t.”

3) More than anything else, they work hard with the “Re’s”. Re-defining. Re-visiting. Re-inventing. Because they realize that what was normal, what used to work, changes every day when living with ALS. This is perhaps the hardest piece. The importance of maintaining a fluidity, a flexibility. Like the waves which ebb and flow, our seascape changes daily and the best swimmer knows not to fight the current, but to try and let it carry you.