Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, December 1, 2008

ALSA 2009 Advocacy Priorities Being Formulated

ALSA chapters are in the process of assembling their top three issues for advocacy for 2009. Chapters' top three issues must be submitted to the ALSA Washington, DC, office by December 12.

Below includes items in the menu of choices which was provided to chapters. Perhaps your local chapter would appreciate hearing your thoughts on your top three priorities.


2008 / 111th Congress Advocacy Listening Tour Issues

National ALS Registry
· Implement the ALS Registry Act, which establishes a national ALS registry at the Centers for Disease Control and Prevention.
· List ALS as the cause of death on death certificates.

· Increase ALS research funding in general – National Institutes of Health, Department of Defense, Veterans Affairs, Centers for Disease Control.
· Stem cell research, including relaxing federal restrictions, expediting human trials.

· Encourage the development of products to treat ALS through FDA drug development process, including FDA Critical Path/Reagan Udall Foundation.
· Ensure that efforts to establish a new approval process for generic biologics do not hinder access to new drugs or drug development.
· The Access Act, legislation that would ban the use of placebos in clinical trials and allow terminally ill patients to purchase investigational drugs once the patients have exhausted existing treatment options and are not eligible for any clinical trials.
· Other issue (please explain)

Veterans Issues
· Ensure implementation of new rules for veterans with ALS that make ALS a service connected disease and establish expedited procedures for veterans to access benefits.
· Assistance accessing/navigating the VA system.
· Develop partnerships for clinical care with the VA, in terms of both research and practice.
· Change functional criteria needed to qualify for adaptive housing grants.
· Other veteran’s issue (please explain)

Long-Term Care Services
· Promote respite care and respite care legislation, including securing appropriations for the Lifespan Respite Care Act.
· Provide Medicare and private coverage of in-home custodial care services and home health aides.
· Change Medicare’s homebound requirements.
· Reimburse family caregivers.
· Establish caregiving tax credits separate from the deduction for medical expenses.
· Provide health benefits to family caregivers.
· Improve access to long-term care insurance at both the state and federal level.
· Encourage home-based care.
· Other long-term care issue (please explain).

Social Security
· Educate local Social Security Administration personnel about the rules for ALS.
· Eliminate the 5-month waiting period for SSDI (disability benefit).
· Eliminate the "20/40" rule under which a person with ALS must have worked five of the previous 10 years in order to qualify for SSDI.
· Other Social Security (please explain)

Medicare Coverage of Durable Medical Equipment (DME)
· Oppose reductions in reimbursement for Durable Medical Equipment.
· Improve coverage for communication/speech generating devices in general.
· Oppose Medicare changes that would eliminate the ‘first month purchase option’ for customized wheelchairs.

· Improve coverage criteria for wheelchairs, including power chairs.
· Improve coverage for bipaps.
· Improve coverage for lift chairs, transfer benches, grab bars, shower chairs, toilet safety frames, toilet seats for bathrooms and kitchens.
· Improve coverage for air-fluidized mattresses and pressure mattresses.
· Improve coverage for DME in general.
· Mandate private coverage for DME needed by PALS.
· Establish caps on out-of-pocket expenses for durable medical equipment.
· Improve coverage for SLP AAC evaluations.
· Other DME issue (please explain)

General Medicare/Medicaid
· Streamline/reduce excessive and burdensome paperwork requirements; address the inefficiencies of Medicare and private insurance.
Estimated percentage of PALS/caregivers/others impacted by the issue in your area: _____
· Educate Medicare and hospice providers that Rilutek is not an aggressive treatment for ALS and should not be a reason for denial of hospice services.
· Speed processing of Medicare claims.

· Other Medicare issue (please explain)
· Other Medicaid (please explain)

Medicare Prescription Drug Benefit
· Improve the current drug coverage to eliminate the coverage gap (‘doughnut hole’).
· Limit the use of utilization management tools such cost sharing, tiering, therapeutic/generic substitutions, quantity limits and other policies of Medicare prescription drug plans.
· Ensure Medicare coverage of specific prescription drugs (Rilutek is currently covered). Please list other drugs that should be covered.
· Ensure Medicare coverage of drugs prescribed off label.
§ Other Medicare Prescription Drug Benefit issue (please explain)

Other Issues
· Charitable giving incentives - allow non-itemizers to deduct charitable gifts.
· Obtain grants to educate nursing homes on how to care for ALS.

· Obtain grants to establish ALS specific nursing facilities.
· Obtain grants to provide transportation assistance and other support to homebound patients.
· Obtain grants to provide social worker consultation services to PALS and families to assist in identifying services.
· Provide counseling for PALS and caregivers to help them cope with the disease.
· Provide legislative protections to prevent abuse and neglect of PALS.
· Ensure adequate supply of flu vaccine and enforcement of CDC guidelines for triage.
· Monitor World Trade Organization activities that impact the availability and dosage of vitamins and supplements that can be acquired without a prescription.
· Support legislation that would adjust the federal financial aid formula for PALS so that the value of their home equity is deducted from the tuition assistance formulas.

§ Other issue (please explain)


  1. Long-Term Care Services
    With a new president the economy should rebound under two years. Then we will have a political environment ripe for ALS respite care. Legislation should begin soon and follow the rulings of the V.A. regarding ALS. Because this is far from budget neutral until we get the deficit under control this legislation would be DOA. Unfortunately this is viewed as custodial care and the government doesn’t fund it unless financially destitute and on Medicaid. I suggest start building grassroots support now with a list server and online petition. A year from now the timing will be right to contact Congress. Without a very large grassroots movement this will never have a chance.

  2. So we can only do three advocacy things a year?

    That seems weird for a disease that demands ultimate multitasking skills from patients and caregivers.

  3. We need to get ALS front and center and on the minds of every legislator and major media person.

    That would certainly make a lot of the priorities much easier to achieve.