Washington Summary April 2018

PKDF Priorities

PKD Foundation is submitting its FY19 funding requests to the House and Senate Appropriations Committees.

PKDF is asking Congress to return PKD to the list of eligible research programs under the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) and to designate $20 million specifically for PKD research. Since 2006, PKD researchers have received grants for the ongoing metformin (TAME) and statin clinical trials and for other projects. Health improvements based on CDMRP research helps military members, their families, and the entire U.S. population.

PKDF will have several requests pertaining to NIH activities. PKDF is part of the Friends of NIDDK coalition that is requesting $2.165 billion for NIDDK, an increase of $194 million from the final FY18 level.

Health Research and Other Spending Programs

Congress finally has completed work on a spending package that keeps government departments and agencies (such as NIH) open for the rest of FY18, which ends on Sept. 30, 2018.

In summary, Congress approved $37.1 billion for NIH in FY18, a $3 billion increase over FY17. Of that amount, NIDDK will receive $1.971 billion, an increase of $100 million over previous funding. These spending levels will be the baseline for determining future health research funding.

Now, the House and Senate Appropriations Committees can focus their efforts on the FY19 budget. HHS Secretary Alex Azar already has appeared before the House Labor/HHS Subcommittee to explain the administration’s budget proposal. Dr. Francis Collins, the NIH Director, recently testified before the House Committee.

Affordable Care Act (ACA) Cost Sharing

Congress has been unable to find a way to stabilize the ACA individual insurance market by providing cost-sharing reduction (CSR) funds. Sen. Susan Collins (R-ME) still hopes that she will get the Senate vote that she was promised last year.

Insurance Coverage for Essential Health Benefits and Pre-Existing Conditions

The administration has announced additional proposals that would revise or replace major ACA provisions. In general, the recent April rules give states more authority over ACA-compliant insurance plans. The rules retain essential health benefits; but states could limit some benefits such as office visits or prescription drugs.

Additionally, some states are taking their own actions. In late January, Idaho announced that it would permit the sale of non-ACA compliant policies to its residents.  Under these policies, insurers could charge higher premiums for people with preexisting conditions.  On March 8, CMS advised Idaho officials that the state’s plan fails to enforce essential ACA provisions. Idaho officials believe that their proposal can be modified to comply with ACA, and they may submit a modified proposal for federal approval.

Elsewhere, Iowa has a new law that would allow the Iowa Farm Bureau and Wellmark to sell non-ACA-compliant health benefit policies. The plans would not be considered insurance and would not have to cover people with pre-existing health conditions.

If you receive your health insurance through a non-ACA plan, you still should monitor future activities in your home state.

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

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 1223, the OPEN Act

  • Rep. David Young R-IA

HR 1270, Living Donor Protection Act

  • Rep. Eliot Engel D-NY
  • Rep. Thomas MacArthur R-NJ

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:  April 12, 2018