Official Legislation for 2013
Senate
S.323 Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013
Sponsor: Sen. Richard Durbin [IL]
Co-sponsors: Sen. Thad Cochran [MS], Sen. Jon Tester [MT], Sen. Mary Landrieu [LA], Sen. Thomas Harkin [IA], Sen. Richard Blumenthal [CT]
What does this bill do?
This legislation would improve the quality of life for people who suffer from kidney disease.
Thousands of Americans under the age of 65 who are being cut off from Medicare after 36 months would be assisted with extended coverage for immunosuppressive drugs for kidney transplants.
Why is this bill important?
Losing access to immunosuppressive medications places patients at a higher risk for losing their transplanted kidney and being placed back on dialysis, a situation that has a higher cost to taxpayers and does not improve patients' quality of life.
Where does this bill stand?
On February 13, 2013, the bill was referred to the Senate Committee on Finance.
www.govtrack.us/congress/bills/113/s323
House
HR 1428 Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013
Sponsor: Rep. Michael C. Burgess [TX-26]
Cosponsors: Rep. Spencer Bachus [AL-6], Lois Capps [CA-24], Bill Cassidy [LA-6], Jim Cooper [TN-5], Ander Crenshaw [FL-4], Elijah Cummings [MD-7], Susan Davis [CA-53], Anna Eshoo [CA-18], Michael Grimm [NY-11], Alcee Hastings [FL-20], James Himes [CT-4], Rush Holt [NJ-12], Ron Kind [WI-3], David Loebsack [IA-2], Tom Marino [PA-10], Jim McDermott [WA-7], David Scott [GA-13], Mark Takano [CA-41], Patrick Tiberi [OH-12], Frank Wolf [VA-10], Bill Young [FL-13], Bill Johnson [OH-6], Tom Latham [IA-3], Zoe Lofgren [CA-19], Bill Posey [FL-8], Martha Roby [AL-2], John Tierney [MA-6], Aaron Schock [IL-18], Adam Smith [WA-9], Sander Levin [MI-9], Donald Payne [NJ-10]
What does this bill do?
This legislation would extend the months of coverage of immunosuppressive drugs for kidney transplant patients.
Patients would be eligible for enrollment in Medicare Part B solely for the purpose of drug coverage.
Why is this bill important?
The bill will improve long-term kidney transplant outcomes by enabling more patients who lack adequate coverage to consider transplantation.
Where does this bill stand?
On April 9, 2013, the bill was referred to the House Subcommittee on Health.
http://www.govtrack.us/congress/bills/113/hr1428
Pending Legislation for 2013
The PKD Foundation has a number of legislative priorities for 2013 which have not yet been officially introduced to the House or Senate. A general statement regarding each of these issues is below. As soon as the legislation is officially introduced, we will provide a bill number and formal summary.
Legislation which would speed up the development of new and better treatments for patients with chronic diseases and disabilities.
Many diseases lack effective treatments, with commonly used drugs benefitting only 50 to 75 percent of the intent-to-treat population. In an era of increasingly scarce resources for health research it is critical to ensure that barriers in the regulatory system are removed and limited dollars are spent most effectively to meet the needs of patients.
Legislation allowing a tax credit for the donation of a life-saving organ for transplantation.
Organ donation is an important priority for kidney disease since it can literally give someone a second chance at life.
Legislation to extend the current Medicare Secondary Payer policy for end stage renal disease (ESRD) patients.
Dialysis patients have the option to continue with their employer group health plans as a primary payer for the first 30 months after their diagnosis. After that period, patients must use Medicare as their primary insurance, even if the employer group plan offers better coverage. This legislation would give the option of continuing private insurance beyond 30 months.
Funding for NIH Research.
The National Institute of Health (NIH) has been funding research for treating and preventing polycystic kidney disease. Several thousand researchers could lose their jobs through sequestration, and thousands of scientists and students could be impacted, so it’s essential that the NIH be protected from these cuts.
Peer Reviewed Medical Research Program – Department of Defense
Senate Appropriations Committee –Subcommittee on Defense
The Fiscal Year 2013 Defense Appropriations Act provides $50 million to the Department of Defense Peer Reviewed Research Program. The PRMRP’s purpose is to improve the health and well-being of all military service members, veterans, and beneficiaries by challenging the scientific community to address medical needs in congressionally directed topic areas.
One of the areas that may be considered for health research this year is PKD. Potential research and clinical trials conducted under the PRMRP may lead to the discovery of a treatment that can delay the progression of PKD long enough so that patients will not experience renal failure or medical symptoms requiring a medical discharge from their military service, saving millions of dollars to the military and the VHA medical systems.
Legislation that would preserve the charitable tax deduction.
If you itemize deductions on your tax return, you may be able to take an income tax deduction for a gift to a qualified charitable organization like the PKD Foundation. This is an important and effective incentive for giving, strengthening the nonprofits and philanthropic sector’s capacity to meet the needs of local communities.