Washington Summary January 2019

End of the 115th Congress

When Congress and the White House did not agree on seven appropriations bills, several federal departments and agencies shut down on Dec. 22. One of the impacted agencies is the Food and Drug Administration (FDA). Shutdown means 40% of FDA employees will be on leave without pay until Congress approves funding. During a previous shutdown, the FDA had to suspend activities relating to routine food inspections, research, and labeling.

The 115th Congress adjourned before it and the administration could reach a deal to fund the impacted departments.

On Jan. 3, the first day of the 116th Congress, the House approved legislation to end the shutdown. The Senate will not take action on the bills until President Trump indicates his support for them.

Federal Judge Says Affordable Care Act Is Unconstitutional

On Dec. 14, 2018, a federal district court judge struck down the entire 2000-page Affordable Care Act (ACA). Further action on the decision has been put on hold (“stayed”) while interested parties appeal to a higher court.

In his decision in the case of Texas v US, Judge Reed O’Connor held that ACA’s individual mandate, which required everybody to have health insurance, was unconstitutional. He held that, because the individual mandate was central to the ACA, the entire law was illegal. The decision most likely will be appealed and eventually should be considered by the U.S. Supreme Court.

For the time being, the ACA will remain in effect during future appeals, and the decision will have little immediate impact on patients. If the decision eventually is upheld on appeal, several key patient protection provisions will disappear. They include:

  • Requiring health insurance policies to cover 10 essential health benefits
  • Covering people with preexisting conditions at reasonable rates
  • Expanding Medicaid eligibility; 37 states are using this provision
  • Saving money for consumers in the Medicare Part D drug “donut hole”
  • Covering children on parents’ insurance until age 26
  • Providing some no-cost preventive services such as vaccines, mammograms, and certain screenings for eligible Medicare recipients

The House has voted to join the lawsuit in support of ACA. House committees, which have a Democratic majority, will work on separate legislation to protect the preexisting conditions provisions and related issues.

How the Republican-controlled Senate responds to the Texas decision and future House action cannot be determined at this time. Sens. Bill Cassidy (R-LA) and Susan Collins (R-ME) may reintroduce their bill to give states more flexibility while retaining the ACA’s consumer protections.

A Look at the 116th Congress

Several of the committees that deal with issues of importance to PKD patients have new leaders. Some positions (such as the chairs, ranking members, and membership of important subcommittees) remain to be finalized. 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.

Defense Appropriations Subcommittee -Sen. Richard Shelby (AL), chair; Sen. Richard Durbin (IL); also minority whip.

Labor-HHS-Education Appropriations Subcommittee – Sen. Roy Blunt (MO), chair; Sen. Patty Murray (WA), ranking Democrat.

Agriculture/FDA Appropriations Subcommittee – Sen. John Hoeven (ND), chair; Sen. Jeff Merkley (OR), ranking Democrat.

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

Senate Health, Education, Labor and Pensions (HELP) – Sen. Lamar Alexander (TN), chair; Sen. Patty Murray (WA), ranking Democrat.

House Appropriations – Rep. Nita Lowey (NY), chair; Rep. Kay Granger (TX), ranking Republican.

Defense Appropriations Subcommittee – Rep. Peter Visclosky (IN), chair; Rep. Ken Calvert (CA), ranking Republican.

Labor-HHS-Education Appropriations Subcommittee – Rep. Rosa DeLauro (CT), chair; Rep. Tom Cole (OK), ranking Republican.

Agriculture/FDA Appropriations Subcommittee – Rep. Sanford Bishop (GA), chair; Rep. Jeff Fortenberry (NE), ranking Republican.

House Energy & Commerce (E&C) – Rep. Frank Pallone (NJ), chair; Rep. Greg Walden (OR), ranking Republican.

E&C Health Subcommittee – Rep. Anna Eshoo (CA), chair; Rep. Michael Burgess, MD (TX), ranking Republican.

E&C Oversight Subcommittee – Rep. Diana DeGette (CO), chair; Rep. Brett Guthrie (KY), ranking Republican.

House Ways & Means (W&M) – Rep. Richard Neal (MA), chair; Rep. Kevin Brady (TX), ranking Republican.

W&M Health Subcommittee – Rep. Lloyd Doggett (TX), chair; Rep. Devin Nunes (CA), ranking Republican.

Hill Agenda for 2019

The pertinent House Committees are expected to consider health insurance proposals relating to the ACA, expanded Medicare, and possibly a single-payer national program. Another high priority will involve trying to reduce prescription drug prices.

It is too early to determine the Senate health agenda, but health care costs should be high on the list. Sen. Lamar Alexander (R-TN) will be a key player on this subject.

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

The PKD Foundation will monitor state and administration activities to change the 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. Stay tuned to PKDF email alerts to know the latest.

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. For more details about previous activities, see previous Monthly Summaries.

Some states continue to take action to counter the administration’s efforts. Vermont insurance regulators are considering a proposal to require that all short-term plans in that state include essential health benefits. Connecticut now will require most health insurance policies to cover ten essential health benefits. Washington State intends to improve insurance plans within that state beginning in 2021. Wisconsin governor Tony Evers (D) has ordered a study on how his state could protect people with preexisting conditions.

Other states may take up ACA-related issues during their 2019 sessions. PKD advocates should monitor activities in their state capitals.

The administration has stated that it is developing a plan to protect people with preexisting conditions if the courts strike down ACA. No details are available now.

Drug Prices

Many PKD patients need prescription drugs to treat the disease or deal with associated symptoms. 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 including the National Health Council, of which PKDF is a member.

Proposals to address high drug prices are expected to be a top priority of Democrats in 2019. Several bills already have been introduced. One would allow people to import drugs from Canada for personal use; Senate Finance Chair Charles Grassley (R-IA) is supporting this bill. Another would require negotiations to reduce Medicare Part D drug costs. A third would link U.S. drug prices to prices charged in a number of foreign countries.

Other options include the Creates Act, which would address drug companies that delay the introduction of cheaper generic alternatives. Another bill would address deals through which drug companies pay generic competitors not to bring their competitive (and often less expensive) drugs to market.

Bills of Importance to the PKD Community

Since the 115th Congress did not approve several important bills, each of these bills will have to be introduced again in 2019. Each will get a new bill number.

  • The Living Donor Protection Act would remove barriers to living organ donation.
  • The OPEN Act would make it easier for companies to repurpose approved drugs for treating rare diseases.

Once the bills are reintroduced, PKD advocates may want to urge past supporters to again co-sponsor the legislation.

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:  Jan. 18, 2019