Washington Summary December 2017

Tax Reform and Health Care

The details of the final tax bill (HR 1) were released on Dec. 15. Here are the provisions impacting health-related issues.

Deduction of medical expenses: The final bill states that for two years (2017 and 2018 tax years), taxpayers will be able to deduct medical expenses above 7.5 percent of their income. In 2019, the bill returns to the current status – permitted medical deduction to expenses above 10 percent of income.

Orphan Drug Tax Credit: The final bill cuts the tax credit in half; in the future it will be 25 percent of eligible expenses. The PKD Foundation and many other patient advocacy groups supported retaining this vital tax credit. Although we are pleased that the credit was not eliminated, we are disappointed that it is being reduced.

ACA individual mandate: The final version contains the Senate language that repeals the individual mandate.

Tuition for graduate students: The bill keeps the present tuition exemption for certain graduate students. This is particularly important for biomedical grad students who also are conducting research on rare diseases such as PKD.

Each household’s tax situation is unique. The impact of the new tax bill will depend on income, family situation, residence, and other factors. For more details on the final version of HR 1, visit the Ways and Means Committee website at house.gov and the Finance Committee website at senate.gov.

Congress continues to discuss ways to stabilize the ACA individual insurance market by providing cost-sharing reduction (CSR) funds. More than 200 groups have endorsed the proposal drafted by Sens. Lamar Alexander (R-TN) and Patty Murray (D-WA). Sens. Susan Collins (R-ME) and Bill Nelson (D-FL) have their own proposals to stabilize the individual insurance market through direct funding and a reinsurance program similar to previous state-based risk pools. Whether any of the efforts will be included in the next spending package (the continuing resolution or CR) remains to be seen.

Fiscal Year 2018 NIH Funding

In September, the House passed a bill that increases funds for NIH by $1.1 billion over the FY17 funding level. The Senate Appropriations Committee approved a proposal to increase NIH funding by $2 billion in FY18.

The current continuing resolution (CR), which is funding NIH at last year’s level, expires on Dec. 22. If Congress does not pass another CR, most government agencies (including NIH and FDA) will close operations temporarily.

There still is time for advocates to contact Congress with a simple message: accept the $2 billion Senate funding level increase for NIH for the rest of FY18.

Essential Health Benefits

In early November, CMS issued proposed rules that would make it easier for states to define “essential health benefits (EHB)” for health insurance coverage. Interested groups (such as insurers, hospitals, providers, and regulators) raised numerous questions about the changes. Some even stated that allowing states to change EHB would return the insurance market place to its pre-ACA situation when pre-existing conditions prevented people from purchasing affordable and comprehensive insurance to cover their medical needs.

CMS is reviewing the public comments on the proposal and will issue final regulations in the near future.

Medicare and Chronic Kidney Issue

The bipartisan Care Demonstration Program for Chronic Kidney Diseases bill (HR 3867) would establish a pilot program to encourage health practitioners to identify early systems of CKD. The goal is to lower overall health care costs by providing better treatment for CKD patients. Reps. Markwayne Mullin (R-OK), George Holding (R-NC), GK Butterfield (D-NC), and Linda Sanchez (D-CA) introduced the bill.

Veterans and Organ Transplants

In November, the House passed HR 1133, the Veterans Transplant Coverage Act. The bill would allow an eligible veteran to receive an organ transplant from a non-veteran at any convenient medical facility, whether a VA hospital or not.

Sen. Dean Heller (R-NV) introduced a similar bill in the Senate (S 115). Sen. John Cornyn (R-TX), the Majority Whip, is a cosponsor.

Bills of Importance to the PKD Community

  • Living Donor Protection Act (HR 1270/no Senate bill yet) would remove barriers to living organ donation. Rep. Jerrold Nadler (D-NY) and Rep. Jaime Herrera Beutler (R-WA) introduced the bill. PKD and several other patient groups have signed a letter urging House Members to cosponsor HR 1270.
  • The OPEN Act (HR 1223/ S 1509) would make it easier for companies to repurpose approved drugs for treating rare diseases. Reps. Gus Bilirakis (R-FL), GK Butterfield (D-NC), and Mike McCaul (R-TX) introduced HR 1223. Sens. Orrin Hatch (R-UT) and Robert Menendez (D-NJ) introduced S 1509.

Say Thanks to Supporters

Too often we forget to thank those elected officials who support proposals of importance to the PKD community.  The following Senators and Members of Congress have cosponsored either the OPEN Act or the Living Donor Protection Act since the previous newsletter.   If any of them represent you, please say “thank you” the next time that you contact them.

HR 1270, Living Donor Protection Act

  • Rep. Jim Costa (D-CA).

Last month we reported that Rep. Terri Sewell (D-AL) and Rep. Jim Clyburn (D-SC) were new sponsors – this is due in large part to the work of the PKD Foundation and our collaboration with former Congresswoman Karen Thurman (1993-2003) who worked on our behalf to secure these key supporters. Thank you Rep. Thurman for your tireless work on behalf of PKD patients everywhere!

Stay Alert

When the time comes, we will ask PKD advocates to immediately contact their elected officials to protect your interests. Your voice needs to be heard.

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UPDATED:  December 17, 2017