Washington Summary September 2018

Both the U.S. House of Representatives and Senate reconvened after Labor Day. Completion of work on appropriations for fiscal year 2019 (FY19) is a top priority.

On Sept. 13, a joint House-Senate conference committee completed work on a massive bill (HR 6157) that will fund the Departments of Defense, Labor, Health and Human Services (HHS), and Education for FY19.  The bill also would fund other federal programs through Dec. 7, 2018. The House and Senate should vote on the bill before Oct. 1. The bill funds several programs of importance to the PKD community.

PKD Foundation Health Research Priorities

HR 6157 increases funds for NIH by $2 billion, bringing the total to $39.1 billion in FY19.  The bill recommends $2.03 billion for the NIDDK, 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 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.

PKD Day Resolution

At the request of PKD Foundation, Sen. Roy Blunt (R-MO), chairman of the Senate Labor/HHS/Education Appropriations Subcommittee, and Sen. Bill Nelson (D-FL) introduced a resolution (S. Res. 576) designating Sept. 4, 2018 as “National Polycystic Kidney Disease Awareness Day.”  The Senate has approved S. Res 576 by unanimous consent, recognizing PKD and our advocates’ efforts.

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

Congress has taken no action to repeal ACA (or Obamacare).  The administration, however, 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 ultimately might make its way up to the US 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 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 would impact the ability of people with preexisting conditions to purchase affordable health insurance policies. No tax dollars are involved in the program. But, in late July, the administration reversed its position and resumed the payments.

On June 19, the US 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 plan 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.

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, however, 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. The California legislature recently passed a bill barring these short-term plans in that state. At the time of this writing, Gov. Jerry Brown has not indicated if he will sign the bill.

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, states continue to consider proposals that would permit the sale of non-ACA compliant policies to their residents. The Nebraska Farm Bureau is considering setting up an association health plan (AHP). In North Carolina, the state senate approved a farm bureau-backed plan (similar to the one in Iowa), but the state house of representatives did not.

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.

Organ Donation

On Aug. 28, 2018, the Department of Labor (DOL) announced that live organ donation surgery is a “serious health condition” under the Family and Medical Leave Act (FMLA).   An organ donor now can use FMLA leave for post-operative treatment.  The impact of the DOL announcement on HR 1270 (see below) remains to be seen.

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. Bill Posey (R-FL)
  • Rep. Luke Messer (R-IN)
  • Rep. Ted Poe (R-TX)
  • Rep. Peter Roskam (R-IL)

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:  September 14, 2018
Published: 12:45 p.m. Sept. 27