Washington Summary October 2018

The House of Representatives will reconvene on Nov. 13. The Senate remains in session as of Oct. 11.

On Sept. 18, the Senate by a vote of 93-7 approved HR 6157, which will fund the Departments of Defense (DOD), Labor (DOL), Health and Human Services (HHS), and Education (ED) for FY19. The bill also would fund other federal programs through Dec. 7. The House approved HR 6157 on Sept. 26, and the bill became law on Sept. 28.

The bill funds several programs of importance to the PKD Foundation.

PKD Foundation Health Research Priorities

HR 6157 increases funds for NIH by $2 billion, bringing the total to $39.1 billion in FY19. Insofar as NIDDK is concerned, the bill recommends $2.03 billion, which is $59 million above current funding. PKD Foundation and other kidney advocacy groups had requested $2.165 billion for NIDDK.

HR 6157 also approved several House items of interest to the kidney disease community. First, it calls 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 the current policy that restricts immunosuppressive drugs after a kidney transplant to three years. Finally, it speaks positively about KidneyX, a public-private partnership to bring new therapies to the public quicker.

Defense Health Research

PKD Foundation asked Congress to return PKD to the list of eligible research programs under the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP). Health improvements based on CDMRP research help military members, their families, and the entire US population. We are very pleased that HR 6157 restores PKD to the list of eligible research programs.

The bill also provides $350 million for competitive peer-reviewed medical research programs; PKD researchers will be able to apply for these funds in FY19.

Affordable Care Act (ACA), Essential Health Benefits, and Pre-existing Conditions

PKD patients and their families need to monitor state and administration activities to change ACA’s guaranteed access to affordable health insurance for persons with preexisting conditions such as PKD. Cheaper plans with limited coverage will reduce the number of people in the ACA-compliant risk pool. That could mean fewer choices and higher premiums if the short-term and association health plans exclude people with preexisting conditions or restrict medicine and services that preexisting patients need.

Congress has taken no action to repeal ACA (or Obamacare). Several Members of Congress (nearly all Republicans) are supporting non-binding resolutions urging the continued protection of people with preexisting conditions, even if ACA is repealed.

The administration has made several decisions that could restrict or end guaranteed access to affordable health insurance for people with pre-existing conditions such as PKD.

In June, the Department of Justice declined to support ACA in 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. Oral arguments on the lawsuit began on Sept. 5. The lawsuit (Texas v. Azar) ultimately might make its way up to the U.S. Supreme Court.

The administration has approved requests by Maine, Maryland, and Wisconsin to reestablish reinsurance programs in those states. The programs would reimburse insurance companies for benefits paid to “high cost” patients, thereby keeping premiums more affordable for the rest of the insured individuals. The administration approved a similar request from New Jersey in mid-August. Alaska, Minnesota, and Oregon received approval in 2017 for reinsurance programs.

In June, the U.S. Department of Labor issued new regulations covering small business association health plans (AHP) that could sell health insurance that could exclude coverage for essential health benefits (EHB). 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 plans could reduce the risk pool and increase costs for patients who have to purchase ACA-compliant insurance. Eleven states and Washington, D.C. have challenged the AHP action in federal court.  In addition, Vermont has imposed restrictions on AHPs in that state; Vermont will require AHPs to continue to cover EHB’s.  In September, California Governor Jerry Brown signed into law a bill that all but eliminates AHP’s in that state.

Some analysts are more concerned with proposals to permit short-term insurance plans. In April, PKD Foundation 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. “

On Aug. 1, the administration approved the sale of short-term plans. The plans could last one year and be renewed for two more years. These plans would not have to cover ACA’s essential health benefits and would not have to enroll people with pre-existing medical conditions. California Gov. Jerry Brown has signed into law a bill barring these short-term plans in that state.

On Oct. 10, the Senate defeated a proposal to overturn the expansion of short-term plans. The vote was 50-50. Under parliamentary rules, a proposal cannot be approved on a tie vote.

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. At the time of this writing, a House-Senate conference committee is meeting to determine the final language of HR 2.

On Nov. 1, the Iowa Farm Bureau will begin offering “health benefit plans” as an alternative to regular health insurance. Since such plans are not covered by regular insurance regulations, Iowans with pre-existing conditions could be refused coverage or charged more for these plans.


PKD Recognition Day Resolution

We want to express our thanks and appreciation to Sens. Roy Blunt (R-MO) and Bill Nelson (D-FL) for their efforts in getting the Senate to approve S. Res. 576, the PKD Day resolution.

Gag Rule

In late September, Congress completed action legislation to make it easier for patients to reduce the cost of their prescription drugs. Two related bills (S. 2553 and S. 2554) remove “gag clauses” that up to now prevented pharmacists from telling people that paying for drugs out of pocket may be cheaper than relying on insurance coverage. Many PKD patients need prescription drugs to deal with health issues associated with their kidney problem. The bills became law on Oct. 10. The bill ending the gag clause on Medicare Part D drug prices will take effect in January 2020.

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 1270, Living Donor Protection Act

  • Ron Kind (D-WI)
  • Katherine Clark (D-MA)
  • Ken Calvert (R-CA)

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.

UPDATED:  October 12, 2018
Published: 2:46 p.m. Oct. 12