Washington summary March 2017

Trump Administration

Former Rep. Tom Price (R-GA) has been sworn in as the Secretary of HHS. He is actively involved in health care reform.

Dr. Scott Gottlieb, a former deputy commissioner, has been nominated to head the FDA. If confirmed by the Senate, Dr. Gottlieb will implement the 21st Century Cures Act and play a role in the PDUFA VI authorization.

Health Care Reform

House Republicans have released their American Health Care Act. Two House Committees—Energy & Commerce and Ways & Means—approved the draft proposal without amendments. On March 16, the House Budget Committee approved the combined bill by a vote of 19-17.

The House plan to replace the Affordable Care Act (ACA) keeps some ACA provisions, in particular protection for people with preexisting conditions and coverage under parents’ health insurance for young adults under age 26. According to several reports, the prohibition on annual and lifetime benefit caps does not change.

The House bill would help people pay for insurance by expanding the use of Health Savings Accounts (HSA) and by providing tax credits based on age rather than income.

To encourage continuous insurance coverage, the bill allows insurance companies to charge a 30% premium on policies for people who have a 63-day gap in insurance coverage.

Older people will be charged more for coverage than young adults. In brief, people between 50-64 years old could be charged five times the cost of a basic plan for younger healthier adults. Today, the limit is three times the cost of the basic plan

Medicaid expansion will end in 2020, and future federal assistance to states for Medicaid will be provided on a per capita basis.

The bill authorizes $100 billion for state stability funds. Each state will create a plan that will use the money for any combination of the following services:

  • Help high-risk people, who do not have employer-provided coverage;
  • Provide incentives to “appropriate entities” to stabilize premiums;
  • Reduce the cost of coverage for people who have a high rate of utilization of health services;
  • Promote access to preventive services, dental and vision services, mental health and substance abuse programs;
  • Pay health care providers for certain services; and
  • Help reduce out-of-pocket costs

How these changes will be funded has not yet been determined.

At this time (March 21), House Republicans are proposing changes to the bill (HR 1628). They include a work requirement for able-bodied Medicaid recipients, changing Medicaid allocations to states, and providing financial help to older people (50-64) seeking private health insurance. The House will vote on the bill as early as March 23.

We are pleased that ACA’s protection of patients with preexisting conditions (such as PKD) will not be repealed. Along with other patient advocate groups, we continue to study the potential impact of other ACA changes to PKD patients and their families. In the meantime, PKD advocates should contact their Representative and Senators with the request the Congress continue to guarantee access to affordable insurance coverage without a cap on benefits for Americans with preexisting medical problems.

We have a list of new Representatives and Senators and of those officials who serve on committees that deal with PKD-related issues. That gives the information you need to introduce yourself to your new elected officials and to begin to educate them on PKD and our needs.

FY17 and FY18 Appropriations

Funding for NIH and FDA expires on April 28. The PKD Foundation and other interested organizations still hope for an increase in NIH funding in the current fiscal year.

However, on March 16, the administration released its FY18 budget proposal. The budget request would reduce total HHS funding to $69 billion, nearly 18 percent lower than the current year. The administration requests $25.9 billion for NIH, a reduction of $5.8 billion from current levels. In addition, the administration proposes to reorganize the 27 institutes and centers within NIH. Finally, the budget calls for changing FDA user fees to add $1 billion to FDA’s budget and for improving FDA efficiency. Congress may take up these changes during its consideration of PDUFA VI legislation in the next few months.

In response to a request for public input, the PKD Foundation already has asked the House Appropriations Committee for an increase in funding in FY18 for NIDDK in general and for PKD research in particular. A similar request is being sent to the Senate Appropriations Committee.

New Congress Means New Bills

Several bills that the PKD Foundation has supported in the past already have been reintroduced in the 115th Congress:

  • Living Donor Protection Act (HR 1270/no Senate bill yet) would remove barriers to living organ donation. The bill was introduced by Rep. Jerrold Nadler (D-NY) and Rep. Jaime Herrera Beutler (R-WA).
  • The OPEN Act (HR 1223/ no Senate bill yet) 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 the bill.

At this time, no action has occurred on these proposals.

Genetic Testing

On March 8, the House Education and the Workforce Committee approved HR 1313, the Preserving Employee Wellness Programs Act. Supporters of the bill say that it would help employers who offer wellness programs at work. Opponents claim that employees who do not provide genetic information on themselves or their families could see their insurance premiums increased by 50 percent.

Stay Alert

The White House and administration could release new policy proposals at any time. The House of Representatives could consider vital legislation in a matter of days.

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: March 21, 2017, 10am