Washington Summary July 2018

Department of Defense Peer Review Medical Research Program

PKDF has asked 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. Health improvements based on CDMRP research help military members, their families, and the entire US population.

Historically, the Senate determines which diseases are eligible for research funding under the CDMRP/PRMRP. On June 28, the Senate Appropriations Committee approved its version of the FY19 Defense Appropriations bill. The bill includes $330 million for competitive peer reviewed medical research. It also restored PKD to the list of eligible research programs. Since the list will not be finalized until the House and Senate resolve the differences in the two bills, we believe that advocates should advise their Senators and Representatives of the importance of including PKD on the CDMRP/PRMRP FY19 list.

PKD Health Research Priorities

On June 28, the Senate Appropriations Committee approved its version of the FY19 Labor/HHS/Education Appropriations bill, which includes funding for the National Institutes of Health (NIH). The bill increases funds for NIH by $2 billion, bringing the total to $39.1 billion in FY19.

On July 11, the House Appropriations Committee approved its version of this legislation. The House bill provides an additional $1.25 billion for NIH, bringing the total to $38.3 billion.

Insofar as NIDDK is concerned, the House bill provides $2.14 billion for FY19, which would be about $179 million above the administration’s budget request. The Senate bill recommends $2.03 billion, which is $66 million above the budget request.  PKDF and other kidney advocacy groups requested $2.165 billion for NIDDK.

The House Committee mentioned several items of interest to the kidney disease community. First, it called on the Department of Labor to clarify eligibility for living organ donation under the Family Medical Leave Act. Second, it wants CMS to look at current policy that restricts immunosuppressive drugs after a kidney transplant to three years. Finally, it spoke positively about KidneyX, a public-private partnership to bring new therapies to the public quicker.

In the past, the final version of the Labor/HHS Appropriations bill often has included a list of diseases and health issues. Congress asks that NIH provide information on NIH’s research efforts and plans for the listed diseases.  PKDF continues to work for inclusion of PKD in the next such list.

PKD Day Resolution

At the request of PKDF, Sen. Roy Blunt (R-MO), chairman of the Senate Labor/HHS/Education Appropriations Subcommittee, is/will be introducing a Senate resolution designating Sept. 4, 2018 as “National Polycystic Kidney Disease Awareness Day.” Sen. Bill Nelson (D-FL) also is supporting the resolution.

The Senate has specific procedures that determine when and how it will consider such resolutions. The more Senators that hear from their constituents in support this proposal, the better the chance that the Senate will approve this recognition of PKD and advocates’ efforts.

Affordable Care Act (ACA)

Rumors persist that Congress may try to repeal ACA (or Obamacare). One proposal being circulated by outsider interests includes a block grant to states. It would eliminate ACA’s essential health benefits, the requirement that all plans cover services like mental health and prescription drugs.

In June, the Department of Justice declined to support ACA in a federal court. The lawsuit, which was filed by 20 state attorneys general, alleges that ACA violates the US Constitution. If successful, the lawsuit would eliminate ACA’s consumer protection provisions, including the requirement that health insurance policies cover essential health benefits and not charge premiums based on age or gender (community rating). The lawsuit ultimately might find its way up to the US Supreme Court.

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 early July, the administration imposed a freeze on risk adjustment payments to insurance companies. In FY17, the program shifted $10.4 billion to insurance plans that enrolled generally older and less healthy patients, thereby keeping premiums more reasonable. The end of these payments could impact the ability of people with preexisting conditions to purchase affordable health insurance policies.  No tax dollars are involved in the program.

On June 19, the US Department of Labor issued new regulations covering small business association health plans that could sell health insurance that could exclude coverage for essential health benefits. Secretary of Labor Alexander Acosta said that the new plans would keep the same consumer protection and anti-discrimination rules (such as covering pre-existing conditions) that apply to large employer-sponsored plans. Non-government analysts fear that the new plan could reduce the risk pool and increase costs for patients who have to purchase ACA-compliant insurance.

Some analysts are more concerned with proposals to permit short-term (less than one year) insurance plans. In April, PKDF joined more than 100 other patient advocacy groups in expressing to Congress our concerns about the impact of the new short-term insurance plan rules on patients. The groups believe that the short-term plans would “limit access to quality and affordable health insurance coverage for all Americans, and disproportionately harm individuals with pre-existing conditions and people with disabilities. “

Association health and short-term plans appeal to generally young and healthy individuals. Their use of these insurance options would reduce the risk pool for remaining health insurance purchasers. That could lead to fewer insurance options and/or higher prices for the rest, including people with preexisting conditions.

Additionally, some states continue to consider proposals that would permit the sale of non-ACA compliant policies to their residents. On the other hand, Vermont plans to require consumer protection provisions in short-term and association health plans sold in that state. If you receive your health insurance through a non-ACA plan, you should continue to monitor future activities in your home state.

The House farm bill (HR 2) contains language that would fund rural associations that offer health insurance to their members. Whether rural co-op plans would provide more insurance options and lower premium costs cannot be determined at this time.  The Senate would have to accept this provision in the final version of the farm bill.

Congressional Recess

The House still is schedule to take its annual summer recess from July 27 through Sept. 3 (Labor Day). The Senate summer recess will be much shorter.

August provides a good opportunity for PKD advocates to meet with their elected representatives at home and to urge them to support PKDF’s legislative agenda.

Information on how to schedule such meetings may be found on the PKD website.

Living Donor

In May, Colorado passed a living donor bill. The National Kidney Foundation noted that the legislation provides paid leave for employees who would like to become a living organ donor and gives private employers a voluntary tax credit to cover up to 10 business days of paid leave.

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. Bonnie Watson Coleman (D-NJ)

HR 1270, Living Donor Protection Act

  • Rep. Derek Kilmer (D-WA)
  • Rep. David Price (D-NC)
  • Rep. Barbara Comstock (R-VA)
  • Rep. Robert Brady (D-PA)
  • Rep. Sanford Bishop (D-GA)
  • Rep. Bill Shuster (R-PA)
  • Rep. Ruben Kihuen (D-NV)
  • Rep. John Culberson (R-TX)

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:  July 11, 2018