PKD Foundation Update

PKD Foundation

From PKD Foundation

Washington Summary March 2018

Advocacy Alert

Last week, the PKD Foundation asked its advocates to urge Congress to keep PKD on the list of eligible research programs for Fiscal Year 2018 under the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP). Thank you to everyone who took action! We are continuing to push and monitor this situation and are also actively working to ensure inclusion for Fiscal Year 2019.

Health Research and Other Spending Programs

Congress continues to work on a spending proposal that will keep government departments and agencies (such as NIH) open for the rest of FY18. The latest short-term funding law expires on March 23.

At this writing, neither the House nor Senate Appropriations Committee has released details on how much NIH and other health research programs will receive for this fiscal year, which ends on September 30. That funding level will be the baseline for determining future health research funding.

At the same time, the House Appropriations Committee is beginning to work on the FY19 budget. On March 15, HHS Secretary Alex Azar appeared before the Labor/HHS Subcommittee to explain the administration’s proposal.

Affordable Care Act (ACA) Cost Sharing

Congress continues to discuss ways to stabilize the ACA individual insurance market by providing cost-sharing reduction (CSR) funds. The latest proposal from Sens. Lamar Alexander (R-TN) and Patty Murray (D-WA) would fund the cost-sharing program, give states more waiver flexibility, and fund reinsurance programs. 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 succeed will depend on convincing the House of Representatives.

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 addition, some states are taking their own actions.

On Feb. 20, the administration announced that it would allow the sale of short-term (less than a full year) health insurance policies. These plans would not have to cover people with certain medical conditions. The plans also could charge higher premiums for people with health issues. Once the 60-day comment period ends, HHS will review the comments and issue a final regulation.

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.

Elsewhere, the Iowa senate has passed a bill that would allow the Iowa Farm Bureau and Wellmark to sell non-ACA-compliant policies.

If you receive your health insurance through a non-ACA plan, you still should monitor 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. Christopher Smith (R-NJ)
Rep. Alcee Hastings (D-FL)
Rep. Barbara Comstock (R-VA)
Rep. Brian Fitzpatrick (R-PA)
Rep. Michelle Lujan Grisham D-NM

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.