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ALS Registry

March 2013

In this Issue . . .  

Ask the Doc: Q&A with Edward Kasarskis, MD, PhD

Dr. Kasarskis

An Update on Potential New Drugs for ALS

Q: I’m thinking about joining a clinical trial testing a possible new medication to treat ALS, but I’m not sure I like the idea of potentially being put on just the placebo drug. What should I know or consider?

A:This is a common question that comes up with every single trial -- why do we need a placebo group? Everyone goes into a clinical trial with high hopes that the drug being tested is going to be better than the placebo, an inactive drug. But that’s not always the case. Sometimes after the study is completed, it turns out that the test drug actually made patients worse. So the people who actually do the best can end up being the ones who are taking the placebo. For example, several years ago there was an important clinical trial of Lithium for ALS, but it turned out it was actually harmful to some ALS patients.

So what exactly is a clinical trial? You have to remember that it is simply a scientific experiment. Although clinical trials are based on a great deal of previous research, they are experiments in humans to prove that a test drug either helps, or does not help real people with ALS. Many of the drugs have been tested with success in animals, or in smaller observational studies in people. When you give a test drug into a large number of people with ALS, you don’t know for certain if it is safe or if it will effectively treat the disease.

Keep in mind that the people who work to develop effective drugs for ALS do so with great commitment and significant expense. Everyone is highly motivated to figure out a treatment that works. But to determine that a drug is effective, a randomized double-blinded clinical trial remains the “gold standard.”

Let me explain what that means. A randomized study means that once you meet the criteria for being included in the clinical trial, you are placed in either the placebo group or a group getting the test drug under evaluation. Typical inclusion criteria might be age, sex, other medical conditions, how long you’ve had ALS, or your muscle strength and breathing capacity. 

The decision of "drug or placebo" is made solely by chance – almost like flipping a coin.  The research pharmacist is the only person who knows what each research participant is getting.  Nothing in the drug’s container or packaging will convey whether it is a placebo or the active drug -- they will look identical.

When a study is double blinded, it means neither the patient nor the research team knows what treatment the patient is taking (either placebo or active test drug).  The double blind ensures that all people involved in the trial – from the patient and the family, to the people administering the drug, to the trial leaders – will be completely unbiased as they record drug side effects or potential improvements (in areas such as grip strength, or breathing capacity, for example).  Without having a “blinded” system, staff would naturally be rooting for the person taking the active drug, hoping for a big discovery. And that could affect the quality and objectivity of the results.

In a clinical trial, patients are asked to take the medication faithfully according to directions and report any side effects they might have.  It’s a big responsibility, especially considering patients and their families know that they may be doing all this and still just taking a placebo. 

Developing successful new drugs for any condition can be very frustrating.  Most studies are based on rock-solid preliminary data and are flawlessly done, but at the end of the day the test drug simply may not work.  That was the case with the recent trial of Ceftiraxone.

Researchers know that patients and families typically only have one shot at a drug trial and they understand how frustrating it can be when a trial fails.  But it may help to know that just participating in a clinical trial provides a positive psychological benefit.  It gives participants a true sense of purpose since they are making a contribution to the global understanding of ALS.  We always learn something. 

The scientists may gain new insights into which classes of drugs might work for ALS, or could get information that helps them better understand how the disease works.

Although the slow march to new findings can be frustrating, it’s important to remember that all our understanding of science has been extremely incremental. I make this point with medical students and residents all the time. The amount of effort it takes to learn one solid fact in clinical medicine is monumental.  It’s rare that there are big paradigm shifts or major insights from any single study or experiment. 

To better understand this, consider how many iterations the concept of a cell phone has gone through. Watch the early James Bond movies and see the “portable” phones they were using. Those clunky machines have now evolved in everyday life into little computer-phones you can put in your pocket.

When it comes to developing new drugs for ALS, the pace of progress is also incremental. So while I am not satisfied with the pace of drug development, I encourage everyone with ALS to participate in any type of research dealing with the disease.  We should all pay attention to the lyrics of the song from West Side Story, Something's Coming--" . . . the air is humming, and something great is coming!"  In ALS, this won't happen without you.

If you would like to submit questions for a future Q & A, please send your questions to Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.

Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multidisciplinary Clinic in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.  

Finding Assisted Living and Supportive Housing Options

By Barbara Bronson Gray, RN, MN

While many people with ALS stay in their homes, others may prefer -- or need -- to live with others, getting assistance with whatever they need. Depending on your circumstances, it may be helpful to know that assisted living and supportive housing options may be an option. 

Assisted Living

Much depends on the type of needs you or your family member have. The cost of the alternatives varies by type of facility, services needed and geographic location.

Assisted Living facilities are designed for people who need some help with activities of daily living but want to live as independently as possible. For some people, assisted living is used mostly for the availability of restaurant-style meals, transportation, and social activities such as bridge groups or outings. Others require help with eating, bathing, dressing, laundry, housekeeping and taking medications. Most assisted living facilities tailor the level of care and the related cost to the needs of the individual resident. Assisted living communities almost always provide 24-hour staff and two to three meals a day. And many facilities are available on a month-to-month basis.

The definition of the term “assisted living” and licensing requirements vary from state to state. Other commonly used terms include residential care, board and care, sheltered housing, and adult homes. Sheltered housing, board and care and adult homes are typically smaller (serving 10 or fewer people) and can be located in traditional homes in residential neighborhoods.

Supportive Housing facilities include senior adult condominiums, market rate rental units and subsidized housing apartments. Supported rental housing is designed for those with limited income. The Department of Housing and Urban Development (HUD) provides what is called “Section 202 housing” that is available to those 62 or older and to physically disabled people age 18 or older who need the design features of the unit and meet income eligibility requirements. HUD Section 8 funds subsidize monthly rental payments.

As for costs, depending on a wide range of variables, assisted living ranges from about $30,000 to $60,000 a year. The average cost nationally is about $3,300 a month. Most facilities charge a basic monthly rate that includes rent, food and utilities, and then bill separately for additional services, such as outings, laundry, housekeeping, and support with the activities of daily living. Most facilities raise their charges between 3% and 5% every year.

Supportive housing may be more affordable if you qualify for HUD subsidies, but it may not provide the level of care needed or anticipated.

When evaluating costs, consider:

  • What public support may be available, such as Medicaid program funds
  • Whether you have long-term care insurance, and what aspects of assisted living are and are not covered by your policy
  • Whether the facility offers a trial period to help you decide if the facility is able to meet your needs



Getting Help at Home

By Barbara Bronson Gray, RN, MN

Depending on the circumstances, many people with ALS and their families decide it is helpful or necessary to bring a homecare worker into their home. While this can be extraordinarily helpful to everyone involved, it can also present some issues and challenges. Finding, hiring and managing someone who works closely with you and your family is never simple. 

Start by defining what type of care or help is needed. This is based partly on the progression of the disease, your preferences, and your financial means. Some people may need someone who can help with personal care, provide help transferring from wheelchair to bed or toilet, meal preparation, and assistance with eating. Others might find they need a housekeeper who would help with cleaning, laundry, and even shopping and errands. Once the responsibilities are well defined, it’s best to write a list of duties or a job description which can serve as a “letter of understanding” to be read and signed by the homecare worker when hired.

Home Care

Recruiting the right caregiver is typically challenging. Options include: recommendations from a friend or relative; suggestions from a church or synagogue, clubs, organizations, support groups, or other homecare workers; references from nurses, social workers or therapists; or ideas from discharge planners at a local hospital. Consider posting an ad in online job lists or on bulletin boards at local senior centers, community colleges, churches, synagogues, and schools of nursing. Other resources include local employment agencies and social services organizations or the nearest Area Agency on Aging.

Some people may be eligible for government subsidized support (such as Medicaid) or for free or low-cost assistance from nursing assistants or others. Volunteer services for help with transportation, home repairs and Meals-on-Wheels may provide additional support.

When interviewing a potential homecare worker, it’s important to discuss the abilities, challenges and limitations you or your family member has, your expectations of the homecare worker and the duties and responsibilities involved in the job. If the job would involve driving to appointments and errands, discuss whether the homecare worker would need a car, if gas costs would be reimbursed, or if the worker would be comfortable driving your car.

Don’t hesitate to bring up the details. For example, should the worker bring lunch, or will that be provided? Discuss the daily schedule and the specific hours you think will work best for you. 

Before you hire the individual, verify the driver’s license and any professional licenses and be sure to get several references. Some people choose to do a thorough background check (see the second bullet under “Resources” below). Be sure you and your family members are comfortable with the prospective worker.

When ready to hire, be clear about salary, hours, days off, how to handle tardiness, illness, sick days and vacation, and the amount of notice both parties will offer if the working arrangement will end. Experts also recommend reading the Internal Revenue Service’s publication 926, the “Household Employer’s Tax Guide.” It may be beneficial to talk with a tax advisor when hiring a homecare worker.

Remember that when a homecare worker is hired, another personality is being brought into the household, and keeping that employee happy and rewarded will have a positive effect on everyone involved. It’s helpful to lay down all the ground rules, orient the worker to the home and the routine, and review all the details involved in getting successfully through a day. It’s essential to give the worker regular praise and feedback. It’s also valuable to listen to their ideas and comments. Be sure to update them regularly on any changes that are necessary in the daily care regimen.

Try to remember that the health and happiness of the person with ALS and the family is the central goal. Be as flexible as possible about issues that arise. Try to make the homecare worker feel welcome in your home. And don’t hesitate to discuss concerns and problems openly and honestly when they arise.


  • CarePathways: information related to home care:
  • U.S. Search: helps conduct background checks on potential hires, searching court records (criminal and civil), credit reports, and verification of personal history:
  • National Association of Area Agencies on Aging: offers resources and information to help older people and those with disabilities to live with dignity and choices in their homes and communities:


Participate in these Educational Web Calls

Ensuring Nutrition with Feeding Tubes in ALS
Monday, March 25, 2013 at 2 p.m. Daylight Standard Time (11 a.m. Pacific Daylight Time)
Speaker: Licensed Dietician from Kimberly-Clark
To join the session by phone:
Call-in toll-free number (US/Canada):1-877-668-4490
Session password: Attopicmarch2013

How TeleHealth Can Improve the Care of People with ALS

James Berry

Hosted by The ALS Association’s Research Department
Tuesday, March 26, 2013, 4 p.m. Eastern Daylight Time (1 p.m. Pacific Daylight Time)
Speaker:  James Berry, M.D., Unit Chief, Massachusetts General Hospital, Multi-Disciplinary Clinic, Boston, Massachusetts
Dr. Berry is the recipient of the Richard Olney Clinical Research Fellowship Award for   the Teleheatlh Program for the Integrated Care of Patients with ALS (telePALS)
To access this webinar click here:

Clinical Trial Pipeline Series

Merit Cudkowicz

An educational webinar presented by the Northeast ALS Consortium
(NEALS)/ALS Association
Wednesday, March 27, 2013, at 4 p.m. Eastern Daylight Time (1 p.m. Pacific Standard Time)
Speaker: Merit Cudkowicz, M.D., M.Sc.,  Professor of Neurology, Harvard Medical School, Boston, Massachusetts
For information on how to access the program, visit:

The ALS Association - 1275 K Street NW - Suite 250 - Washington, DC 20005
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