Washington Summary December 2018

Congress reconvened on Nov. 13. Between now and the end of the year, Congress needs to complete work on seven appropriations bills. One of the bills funds part of the Food and Drug Administration (FDA).

A Look Ahead to the 116th Congress

Democrats will control the House of Representatives in 2019. Republicans will maintain their Senate majority.

Several of the committees that deal with issues of importance to PKD patients will have new leaders next year. Some positions (such as the chairs and ranking members of important subcommittees) will not become official until the 116th Congress convenes in January. These committees will work on health insurance coverage, drug prices, research funding, and related issues.

Here is the latest information on committee leaders:

Senate Appropriations Committee— Sen. Richard Shelby (AL), chair; Sen. Patrick Leahy (VT), ranking Democrat.

Senate HELP Committee— Sen. Lamar Alexander (TN), chair; Sen. Patty Murray (WA), ranking Democrat.

Senate Finance Committee— Sen. Charles Grassley (IA), chair; Sen. Ron Wyden (OR), ranking Democrat.

House Appropriations Committee— Rep. Nita Lowey (NY), chair; Rep. Kay Granger (TX).

House Energy and Commerce Committee— Rep. Frank Pallone (NJ), chair; Rep. Greg Walden (OR), ranking Republican.

House Ways and Means Committee— Rep. Richard Neal (MA), chair; Rep. Kevin Brady (TX), ranking Republican.

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). On Nov. 7, Senate Majority Leader Mitch McConnell (R-KY) indicated that legislation to change ACA would have to occur in consultation with Democrats.

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. Past actions focused on association health plans (AHP) and short-term (less than one year) insurance plans. In late November, the administration allowed states to use ACA insurance subsidies for plans that do not comply with ACA provisions. For more details about previous activities, see previous Monthly Summaries.

In Nevada, many business associations have started their own AHPs. The Illinois Farm Bureau is considering the AHP option.

Some states continue to take actions to counter the administration’s actions. Washington State will limit short-term plans to three months and will retain many of ACA’s consumer protections.

The lawsuit (Texas v. United States) suggesting that all of ACA is unconstitutional also could impact people with employer-provided health insurance. Before ACA, employers could withhold health coverage for up to one year for people with preexisting conditions if the employee did not have “continuous coverage.” If the court declares ACA unconstitutional, that situation may return. Most health policy experts believe that early in 2019 the House will vote to join the lawsuit in support of ACA’s consumer protection provisions. The Supreme Court ultimately may determine ACA’s fate.
The administration has stated that it is developing a plan to protect people with preexisting conditions if the courts strike down the ACA. No details are available now.

Important update: On December 14, 2018, a federal district court judge struck down the entire 2000-page Affordable Care Act (ACA). Click here to read more.

Drug Prices

Many PKD patients need prescription drugs to deal with symptoms associated with their kidney disease. Medicare, group insurance through employment, or private insurance plans may cover a portion of the high cost of some of these drugs.

The administration is taking regulatory action that it claims will reduce drug prices.
The administration is drafting a drug price rule to reduce Medicare Part D prices. Specific provisions have not been made public at this time, but a number of groups already are questioning the proposal.

In the past, incoming Senate Finance Committee Chairman Charles Grassley (R-IA) has supported prescription drug price transparency and the importation of drugs from Canada.

Proposals to address high drug prices are expected to be a top priority of House Democrats in 2019.

Bills of Importance to the PKD Community

If the current Congress takes no action, each of these bills will have to be introduced again in the 116th Congress in 2019.

  • Living Donor Protection Act (HR 1270/no Senate bill) 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) (who is retiring) 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

  • Rep. Doris Matsui (D-CA)
  • Rep. Paul Tonko (D-NY)
  • Rep. Brian Mast (R-FL)

Stay Alert

When the time comes, we will ask PKD advocates to contact their elected officials to protect your interests immediately. Your voice needs to be heard.

UPDATED:  December 14, 2018