National ALS Advocacy Day and Public Policy Conference – 2014

National ALS Advocacy Day and Public Policy Conference – 2014

May 7-8-9 – Washington, DC.

Organized by ALS Association

My husband and I attended this three day Public Policy Conference.  May 8th was thedesignated National ALS Advocacy Day.  The entire conference was professionally organized by ALS Association.  Well over 150 ALS patients attended the conference.  We all visited the Capital Hill on the ALS Advocacy Day.  I visited the offices of the Senators and Congressmen representing the State of New Jersey in Washington, DC.  These visits were scheduled in advance by the ALS Association of Greater New York Chapter.  I visited the offices of:

Senator Cory Booker, Senator Bob Menendez, Congressmen Leonard Lance, Albio Sires, Bill Pascrell, and Frank Pallone, Jr.

We requested for funds to fight ALS.  We presented four major priorities:

1).  Appropriate $10 million to continue the national ALS Registry at the Centers for Disease Control and Prevention.   The administration and congress made the establishment of a national ALS patient registry a top priority through the enactment of the ALS Registry Act in 2008 and by appropriating funding to develop and implement the registry in each year.  These actions have enabled the CDC/ATSDR to launch the first ever National ALS Registry.  It is identifying the number of ALS cases in the U.S. and collecting data that may help learn what causes the disease and how it can be treated, prevented, and cured.

However, funding is necessary in FY 2015 to continue the registry, coordinate federal efforts, help patients enroll in registry, and conduct outreach program to identify ALS cases in all 50 states.  Also, continued funding is needed to collect additional information about the cases and enable the registry to advance clinical trials to develop new treatment for disease.

2).  Appropriate $10 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD).

Studies supported by the DOD, Department of Veterans Affairs, National Institutes of Health, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans, regardless of branch or era of service, are approximately twice as likely to die from Lou Gehrig’s Disease as those who have no served in the military.

In order to support our nation’s military heroes in the fight against ALS, Congress and DOD established the ALS Research Program (ALSRP) in FY 2007.  The ALRP is promoting translational research and is specifically designed to find new treatment for ALS.  The ALSRP also is funding the best science as funding is provided on a competitive grant basis and projects are peer reviewed.  While Congress has continued to appropriate funding for the ALSRP, including $7.5 million in FY 2014, the current funding level only will be able to support approximately 4 to 5 projects, yet over 100 are submitted to the program each year.  As a result, under the current level more than 95% of submitted projects will not receive funding.  Opportunities to discover and deliver a treatment to veterans will be lost, leaving them – and all people living with the disease – with no effective treatment option.  By appropriating $10 million for the ALSRP in FY 2015, Congress can continue this vital program and take steps to ensure that our nation continues to fight for our veterans just as they fought for us.

3).  Enact the MODDERN Cures Act (H.R. 3116)

Regulatory barriers and limited incentives to pursue innovation have hindered the development of new treatments and diagnostic tools for ALS and other diseases with unmet medical needs.  In fact, people with ALS will die in an average of just two to five years because an effective treatment does not exist and because diagnostics and biomarkers have not been identified that can speed diagnosis, improve care, and expedite the discovery of new treatments.

The MODDERN Cures Act (Modernizing our Drug and Diagnostics Evaluation and Regulatory Network) would accelerate the search for a treatment for ALS and other diseases by removing the barriers that limit medical innovation and by providing incentives to develop new treatments and diagnostic tools that can improve, prolong, and ultimately save lives.  Specifically the bill will: encourage research on treatments, which have been set aside in the lab, but hold promise for treating diseases with unmet medical needs, and provide incentives to develop new diagnostics.

4).  Ensure Access to Speech Generating Devices

On April 1, 2014 the Centers for Medicare and Medicaid Services (CMS) changes the manner in which it pays for speech generating devices (SGDs) and certain power wheelchair accessories.  This change will limit the ability of people with ALS to access SGDs.  Under the change, the “capped rental,” people with ALS who need SGDs will be required to rent them over a 13-month period, after which time they will own the device.  Under the previous policy, people with ALS had the option to purchase SGDs up front, which is how over 99% of them obtained SGDs.  While this switch may seem to be a minor change in policy, it will have significant impacts on patients.

For example, if people have an extended hospital stay or enter or a nursing facility while they are in the 13-month rental period, Medicare payment will cease.  The device must be returned to the vendor, forcing patients to either obtain a new one from the hospital, hospice or nursing facility, or pay the entire costs out-of-pocket.  This will result in patients losing access to their personally programmed SGDs while they are institutionalized, during a time when their health is at the highest risk and when the devices are most needed to communicate with medical staff.  These institutions generally do not currently provide SGDs and do not have staff experienced in providing SGDs.  In addition, because SGDs are highly customized devices, designed and adjusted to meet the specific medical needs of each individual patient, they cannot readily be substituted with “off the shelf” technology.  In short, ere the regulation will leave many patients with no way to communicate.

We  urged the Members of Congress to work with ALSA to stop this regulation and give a voice to people with ALS.


Amyotrophic Lateral Sclerosis (ALS):  is a progressive neurodegenerative disease that attacks nerve cells and pathways in brain and spinal cord.  When these cells die, voluntary muscle control and movement die with them.  Most of the patients die within two to five years from time of diagnosis.  There are no biomarkers to diagnose the disease.  Medical doctors then go through physical examination and an elimination process of other diseases.  As a result, by the time of diagnosis, ALS has already progressed.  There is no known cause of the disease.  There is no cure or effective treatment.  ALS can strike anyone at anytime, regardless of age, race, gender, or family history.