Washington Summary February 2018

Health Research and Other Spending Programs

On Feb. 9, Congress approved the Bipartisan Budget Act of 2018 that kept government departments and agencies (such as NIH) open until March 23. The short-term funding bill is part of a larger budget agreement. That agreement includes an additional $2 billion over two years for NIH research.

The new budget agreement increases both domestic and defense spending through FY19. It extends the community health center program for two years. In addition, the bill includes the CHRONIC Care Act, which would allow dialysis patients on Medicare to receive certain services through telehealth. Another four-year CHIP extension was added to the six-year extension approved earlier this year.

In non-health areas, the agreement provides, among other things, $90 billion for disaster relief (hurricanes, wildfires, etc.); $20 billion for infrastructure programs; and an increase in the debt limit to allow the government to pay its bills until March 2019.

On Feb. 12, the administration released its proposed FY19 budget. This budget was drafted before the Feb. 9 agreement. The original budget sought a reduction in NIH funding. According to data supplied by the Department of Health and Human Services (HHS) after the Feb. 9 budget deal, the administration now is seeking $35.5 billion for NIH in FY19. NIDDK would get $1.965 billion, which is lower than its FY17 level.

Now the real work begins in Congress to maintain strong NIH research activities. First, Congress must complete action on FY18 spending; that could include allocating some or all of the additional $2 billion in NIH funds. Then Congress will begin work on the FY19 budget (effective Oct. 1, 2018). NIH could receive additional money in both FY18 and FY19; exactly how much of an increase remains to be determined.

Health Care

Congress continues to discuss ways to stabilize the ACA individual insurance market by providing cost-sharing reduction (CSR) funds. More than 200 groups have endorsed the proposal drafted by Sens. Lamar Alexander (R-TN) and Patty Murray (D-WA). 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 a currently reluctant House of Representatives.

Administration News

The Senate confirmed Alex Azar as Secretary of Health and Human Services (HHS). He is a former high-ranking HHS official and top executive with Eli Lilly.

In recent testimony to Congress, Secretary Azar indicated that HHS will focus on the opioid problem, high drug prices, mental illness, greater health insurance flexibility (including ACA repeal), and sustainable Medicare and Medicaid reforms.

He indicated support for continued investment in NIH and innovative public-private partnerships.  NIH will provide grants for projects with the “highest potential to accrue benefits” for public health.  With regard to FDA, the goal is quicker approval of new drugs.

Essential Health Benefits and Pre-Existing Conditions

The administration has proposed several new regulations that would revise or replace major ACA provisions.

In November, CMS proposed rules that would make it easier for states to define “essential health benefits (EHB)” for health insurance coverage. Interested groups (such as insurers, hospitals, providers, and regulators) raised numerous questions about the changes. Some even stated that allowing states to change EHB would return the insurance market place to its pre-ACA situation when pre-existing conditions prevented people from purchasing affordable and comprehensive insurance to cover their medical needs.

In January, the administration released a proposal to expand the use of association health plans (AHP) by small businesses and the self-employed. Associations would not be able to discriminate against people because of their health history.

Some health care analysts believe that the combination of these and future proposals might undermine ACA’s patient protections provisions. Patient advocacy groups continue to study the potential impact of the new proposals on patients with pre-existing conditions.

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 pre-existing conditions. ACA supporters want HHS to reject Idaho’s plan.

On Feb. 20, the administration announced that it would allow the sale of short-term (less than a year) health insurance policies. These plans would not have to cover people with certain medical conditions. The general public will have 60 days to make its views known. This proposal decreases the likelihood that HHS will reject the Idaho plan.

If you receive your health insurance through a non-ACA plan, you should monitor activities in your home state. The best way to do this is through local news media and your state health and insurance departments.

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.

S 1509, the OPEN Act

  • Sen. Marco Rubio (R-FL)

HR 1270, Living Donor Protection Act

  • Rep. Gerald Connolly (D-VA)
  • Rep. Jimmy Gomez (D-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.

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UPDATED:  Feb. 20, 2018