Email to Senators Casey & Toomey re: 12/22/2017 Continuing Resolution expiration

As a constituent, MS activist and veteran living with MS I urge you to raise the budget caps and fully fund the government budget providing parity for defense and non-defense funding, included in this request I also urge you to:

1. Prioritize medical research funding by maintaining the following increases that have been recommended: $36.2 billion for the National Institutes of Health (NIH) and $6 million for the MS Research Program at the Department of Defense.

2. Provide $3.36 million for the Lifespan Respite Care Program to support family caregivers.

3. Provide $5 million for the National Neurological Conditions Surveillance System: a nationwide system at the Centers for Disease Control and Prevention to track the incidence and prevalence of neurological diseases, including MS, which could one day leady to a cure.

Sincerely,

Senator Robert Casey Responds Regarding S.1131 the Fair Accountability & Innovative (FAIR) Drug Pricing Act of 2017

Dear Mr. Austin: Thank you for taking the time to contact me about S. 1131, the Fair Accountability and Innovative Research (FAIR) Drug Pricing Act of 2017. I appreciate hearing from you about this issue. S. 1131 was introduced on May 16, 2017, by Senator Tammy Baldwin of Wisconsin. This legislation would require pharmaceutical manufactures to report planned increases in the price of certain drugs to the Department of Health and Human Services. Under S. 1131, manufacturers would be required to report increases of 10 percent or more over a 12-month period or 25 percent or more over a 26-month period. The reports would include information such as pricing history for the drug and a justification for the new price increase. The FAIR Drug Pricing Act of 2017 would require these reports for prescription drugs commonly used at hospitals, excluding vaccines, drugs for rare conditions and drugs with annual sales for Medicare and Medicaid enrollees of less than $1. The FAIR Drug Pricing Act of 2017 has been referred to the Committee on Health, Education, Labor, and Pensions, of which I am a member. Please be assured that I will keep your views in mind as the committee considers this legislation. The rising cost of prescription drugs has taken a toll on citizens all across the country, particularly in Pennsylvania. I understand the difficulties that families face when the medication that can treat a loved one is too expensive. Fixing this problem is a priority for Pennsylvanians, and it is one of my priorities in the U.S. Senate. Recently, with Senator Bernie Sanders of Vermont and Senator Cory Booker of New Jersey, I was pleased to introduce S. 469, the Affordable and Safe Prescription Drug Importation Act. This bill would allow wholesale distributors, pharmacies and individuals to import certain types of prescription drugs from Canada. S. 469 also includes language to ensure the safety of imported medication and the integrity of the prescription drug supply chain. Maintaining the integrity of our drug supply, the safest in the world, is critical, and these safety provisions are a key part of S. 469. I look forward to working on the issue of drug prices in the future, and to working with my colleagues in the Senate to advance S. 469. If you require assistance paying for your prescription medication, there are resources available. Many pharmaceutical companies offer assistance programs, and for older citizens, Pennsylvania has resources such as free counseling to help you compare health care and prescription drug plans. For information about these programs, please contact the Pennsylvania Department of Aging APPRISE Program at 1-800-783-7067. APPRISE is a service for Pennsylvanians age 60 and above, regardless of income. If you are unsure who you should contact, please do not hesitate to call my Harrisburg office at (717) 231-7540 or visit http://casey.senate.gov/constituents/casework/. Again, thank you for sharing your thoughts with me. Please do not hesitate to contact me in the future about this or any other matter of importance to you. For more information on this or other issues, I encourage you to visit my website, http://casey.senate.gov. I hope you will find this online office a comprehensive resource to stay up-to-date on my work in Washington, request assistance from my office or share with me your thoughts on the issues that matter most to you and to Pennsylvania. Sincerely, Bob Casey United States Senator

Senator Robert Casey re: S. 253 the Medicare Access to Rehabilitation Services Act of 2017,

Dear Mr. Austin: Thank you for taking the time to contact me about the Medicare therapy caps. I appreciate hearing from you about this issue. Outpatient physical, speech and occupational therapy services are subject to annual reimbursement caps under Medicare Part B. While there is an exceptions process in place that allows beneficiaries to continue receiving therapy after hitting the cap, I support fully repealing the therapy caps to ensure beneficiaries have access to critical rehabilitative care. During the 113th Congress, I was pleased to see that a full repeal of the therapy caps was included in discussions regarding legislation to reform the Sustainable Growth Rate (SGR), Medicare’s physician payment formula. During the 114thCongress, while it was important that the Senate came together to repeal and replace the flawed SGR formula by passing the Medicare Access and CHIP Reauthorization Act, I was disappointed that a repeal of the therapy caps was not included in the final law. I cosponsored an amendment to this act to repeal the therapy caps, but the amendment failed to gain enough support to pass. I will continue to work on this issue. I am a proud cosponsor of S. 253, the Medicare Access to Rehabilitation Services Act of 2017, which was introduced by Senator Ben Cardin on February 1, 2017 and would repeal the therapy caps. This bill was referred to the Senate Committee on Finance, of which I am a member. Should this bill come up for consideration by the Committee, please be assured I will keep your comments in mind. Again, thank you for sharing your thoughts with me. Please do not hesitate to contact me in the future about this or any other matter of importance to you. For more information on this or other issues, I encourage you to visit my website, http://casey.senate.gov. I hope you will find this online office a comprehensive resource to stay up-to-date on my work in Washington, request assistance from my office or share with me your thoughts on the issues that matter most to you and to Pennsylvania. Sincerely, Bob Casey United States Senator

Finish the FY 2018 federal budget

Finish the FY 2018 federal budget

Letter to Senators Casey and Toomey,

As a constituent and MS activist, I urge you to work with your fellow members of Congress on the completion of a fiscal year (FY) 2018 federal budget before the end of the year. Continuing resolutions, as opposed to a finished budget, puts at risk vital programs and services for individuals living with MS and their family members. This could potentially halt progress on cutting-edge research for MS or other neurologic diseases through the National Institutes of Health (NIH) and the MS Research Program at the Department of Defense (DoD) that may lead to the next breakthrough or even a cure.

I respectfully ask you to complete 2018 funding and to:

- Prioritize medical research funding by maintaining the following increases that have been recommended: $36.2 billion for the National Institutes of Health (NIH) and $6 million for the MS Research Program at the Department of Defense.

-$3.36 million for the Lifespan Respite Care Program to support family caregivers.

-$5 million for the National Neurological Conditions Surveillance System: a nationwide system at the Centers for Disease Control and Prevention to track the incidence and prevalence of neurological diseases, including MS, which could one day lead to a cure.

We need ALL the research included in the 21st Century Cures Act NOW!

Please help support individuals living with MS, their family members, and others across the country affected by neurological disorders and chronic diseases through a finished FY2018 federal budget!

Sincerely

This is no drill

National MS Society Endorses MS “NARCRMS” Data Registry

https://www.nationalmssociety.org/About-the-Society/News/National-MS-Society-Endorses-MS-NARCRMS%E2%80%9D-Data-Reg

From the National MS Society Web Site

December 4, 2017

Collaboration Will Result in Better Understanding of MS and Better Care

The National Multiple Sclerosis Society is proud to announce its endorsement of the North American Registry for Care and Research in MS (NARCRMS). NARCRMS is a physician/clinician-based MS registry and longitudinal database of clinical records and patient-centered outcomes, under the auspices of the Consortium of Multiple Sclerosis Centers (CMSC).

The mission of NARCRMS is to provide clinicians and researchers with a greater, more integrated ability to track the incidence, prevalence and course of multiple sclerosis. Through information sharing, NARCRMS seeks to improve the understanding of MS and facilitate care at every level.

Physician-collected data will include neuroimaging, genetic markers, clinical and cognitive assessments, and specimen collection and testing for the study and validation of biomarkers of disease progression. Patient-reported outcomes focused on the challenges of MS and its impact on daily life will complement physician-generated information.

“NARCRMS addresses a pressing need in MS research and care, “said Cyndi Zagieboylo, President and CEO of the National MS Society. “By collaborating with NARCRMS, we can more effectively utilize data to advance our understanding of MS and do more to help people with MS live their best lives.”

June Halper, President and CEO of the CMSC says, “We are grateful the Society has decided to partner with us on this pioneering effort to accelerate collaboration and more effective utilization of data on behalf of all people living with MS.”

Kottil Rammohan, M.D., director of NARCRMS echoed Halper’s sentiments saying, “We are delighted to have the National MS Society on board and look forward to a long and productive collaboration.”

NARCRMS is a highly collaborative effort involving other MS registries, clinicians, researchers, and people living with MS.  It will allow for the linkage of centers and facilitates along with regional analysis of data by state, region, and zip code. NARCRMS will facilitate the recruitment of participants for clinical trials as the registry grows.

In addition, NARCRMS is unique in being the first open source database to link North American MS Centers in the US and parts of Canada.

To date NARCRMS has recruited 10 centers and enrolled 113 patients with an additional three centers expected to join shortly. For more information: www.narcrms.org.

This clinician-driven registry builds on a parallel patient-driven registry called the North American Research Committee on Multiple Sclerosis (NARCOMS). NARCOMS is the oldest patient-driven registry in the U.S. It uses the power of the patient experience to improve clinical care and quality of life for persons living with MS. 
About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.