Washington Summary February 2019

FY20 Budget Request

The administration has delayed the release of its fiscal year 2020 (FY20) budget until around March 11. The budget will contain information on the administration’s research priorities (including NIDDK) for the fiscal year beginning Oct. 1, 2019.

Partial Government Shutdown

On Jan. 28, furloughed federal employees returned to work. It may take weeks if not months for business to return to normal. For instance, the FDA may not get up to date for a year on its new drug and medical devices review and approval process.

Those departments and agencies that had been shut down received three weeks of funding until Feb. 15. On Feb. 14, Congress approved appropriations that will keep the government functioning through Sept. 30, 2019.  President Trump signed the bill before midnight on Feb. 15. The same day, he declared a national emergency that will allow him to bypass Congress to fund a wall along the southern border of the United States.

Health Care and Insurance in the Courts

For the time being, ACA remains in effect. A federal court of appeals should hear the case of Texas v US this summer. 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 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 consumer protection issues.

Committees of the 116th Congress

The committees that deal with issues of importance to PKD patients have organized and have begun their legislative and oversight operations. These committees work on health insurance coverage, drug prices, research funding and related issues.

The January summary listed the key officials on these committees.

Congress and Health Insurance

The US House of Representatives will focus on two major health issues: protecting ACA’s consumer protection provisions and expanding health insurance coverage. The phrase “Medicare for All” is receiving a lot of attention in the media. That is a simplified phrase that covers a broad range of legislative proposals. These bills cover a single-payer national health insurance system; several bills to permit people aged 55 (or 50) to enroll in Medicare; expanded state Medicaid programs; and other proposals to provide universal access to health insurance.

Nobody expects the Senate to consider any major health insurance measure that the House may pass.

Health Insurance:  Affordable Care Act (ACA), Essential Health Benefits, Preexisting Conditions and More

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 health plans exclude people with preexisting conditions or restrict medicine and services that preexisting patients need.

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

State Action on Health Insurance

Several state legislatures are reviewing state-run public insurance options or other proposals to keep health insurance available and affordable in their states. A dozen states are considering expanding their Medicaid programs, the federal-state health insurance program that covers the disabled and low-income population. PKD advocates should monitor these activities in their state capitals.

Drug Prices

Many PKD patients need prescription drugs to treat PKD and/or deal with symptoms associated with their 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 hopes will reduce drug prices, especially for Medicare Part D drugs.

Proposals to address high drug prices will be a top priority in Congress this year. 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 US 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.

The House Oversight and Government Reform Committee has begun an investigation of drug pricing practices. Chairman Elijah Cummings (D-MD) goals are to learn why prices are increasing dramatically and how the drug manufacturers are using their additional funds. The Committee held its first hearing on Jan. 29.

The House Energy and Commerce Committee also is active. Chairwoman Diana DeGette (D-CO) of the Energy and Commerce Oversight Subcommittee has indicated her agenda for the new Congress. They include: requiring drug makers to explain price increases; directing Medicare Part D to negotiate lower drug prices; stabilizing the ACA and reducing its premiums; and finding a solution to drug shortages. She also would like a debate on proposals to expand health care coverage, such as Medicare for All or a Medicare buy-in for people over age 50.

Rep. Anna Eshoo (D-CA), who now chairs the House Energy & Commerce Health Subcommittee, intends to work on retaining the ACA and reducing drug prices and drug shortages.

Organ Donation

The PKD Foundation has joined several other patient advocacy groups in asking the Department of Health and Human Services (HHS) to expand the National Living Donor Assistance Center (NLDAC) to cover living organ donor lost wages, childcare, and other donation expenses. The program already covers travel expenses.

Some state legislatures (such as Kansas and New York State) have before them bills to improve living organ donations.

Surprise Medical Bills

The administration and both Houses of Congress are studying ways to protect patients that receive unexpected medical bills. Generally, the bills are received when an insured patient receives care from a doctor or facility that is not within the insurance company’s network of providers.

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. These include:

  • The Living Donor Protection Act would remove barriers to living organ donation. On Feb. 14, this bill was introduced in both the House and Senate. Reps. Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA) introduced HR 1224.  Sens. Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR) introduced S. 511.
  • The OPEN Act would make it easier for companies to repurpose approved drugs for treating rare diseases.
  • The Immunosuppression Drug Act.

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

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. 15, 2019