Washington Summary January 2018

Second Session of Congress Begins

Congress has returned for what could be a busy 2018. The agenda includes the children’s health program (CHIP) and a number of non-health-related national issues: raising the debt ceiling so the US can pay its bills; flood insurance reform; the surveillance law to protect national security; an immigration law; budget priorities for defense and domestic spending; disaster aid; infrastructure; and additional tax changes.

First and foremost is funding for the rest of FY18. Funding for government programs, including NIH research, expired on January 19. Whether Congress will increase NIH funding this year remains to be seen. In addition, some of the issues mentioned above might be added to the spending bill, which might delay the bill.

Since Congress could not agree on a new spending bill by midnight January 19, regular and routine government functions have ceased until new funding becomes available. The last shutdown occurred from October 1-16, 2013.  At that time, NIH furloughed 75 percent of its workforce, stopped work on many research projects, and delayed action on new grant proposals. Patients who were enrolled in clinical trials continued to receive care, but no new patients were enrolled in trials.

On January 22, Congress approved another temporary funding bill, which will allow government operations to resume.

In February, the administration should release its proposed FY19 budget.  Then the real work begins on maintaining strong NIH research activities.

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.

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.

The administration also is expected to permit short-term insurance policies that would not have to cover current EHBs. Under such plans, insurers could charge higher premiums for people with pre-existing conditions.

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

Veterans and Organ Transplants

In November, the House passed HR 1133, the Veterans Transplant Coverage Act. The bill would allow an eligible veteran to receive an organ transplant from a non-veteran at any convenient medical facility, whether a VA hospital or not. Sen. Dean Heller (R-NV) introduced a similar bill in the Senate (S 115).  Sen. John Cornyn (R-TX), the Majority Whip, is a cosponsor.

On Dec. 19, the House Veterans Affairs Committee approved HR 4242, the VA Care in the Community Act. The bill includes language similar to S 115 to authorize live organ transplants in VA facilities even if the donor is not a veteran. Congress could complete action on this new authority this spring.

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.

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:  January 22, 2018