Washington Summary March 2019

FY20 Budget Request

On March 11, the administration released its fiscal year 2020 (FY20) budget. The budget will contain information on the administration’s research priorities, including the NIH/NIDDK and FDA, for the fiscal year beginning Oct. 1, 2019.

In brief, the budget requests an appropriation of $33.5 billion for NIH, compared to $39.1 billion for the current fiscal year.

The administration’s budget request details its spending and policy priorities.  Congress decides how and for what programs money will be spent.

That is why the PKD Foundation has joined more than 300 patient and research organizations in asking Congress to provide NIH with $41.6 billion, which would be $2.5 billion above the FY19 level. In recent years, Congress generally has increased NIH funding by $2 billion a year.

PKD Foundation will be asking Congress for $2.165 billion. In addition, PKDF is requesting $20 million through a Department of Defense medical research program known as CDMRP.

Congress and Health Insurance

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 to provide universal access to health insurance.

On Feb. 28, Reps. Pramila Jayapal (D-WA) and Debbie Dingell (D-MI) introduced HR 1384, the Medicare for All Act. The bill has more than 100 cosponsors. In brief, the bill would replace private health insurance with a government-run program. It also would cover a number of services that the current Medicare program does not cover, such as vision and dental services and long-term care in nursing homes.

Other Democrats are taking a more measured approach to providing access to affordable health care services. For example, Sen. Debbie Stabenow (D-MI) introduced S. 470, the Medicare at 50 Act. The bill would let people ages 50 to 65 buy a private health insurance plan through Medicare. People who qualify for insurance subsidies under the ACA would be able to use them to pay for the coverage. Rep. Brian Higgins (D-NY) introduced a similar bill (HR 1346).

Sen. Brian Schatz (D-HI) and Rep. Ben Ray Lujan (D-NM) have proposed yet another option. Their proposal (S. 489 and HR 1277) would create a buy-in option for the state-run Medicaid program.

Sen. Bernie Sanders (I-VT) will be introducing an updated version of his Medicare for All bill from 2017. The newer proposal will include long-term care coverage, which Medicare does not now provide.

Nobody expects the Senate to consider any major health insurance measure that the House may pass. Health and political analysts believe the House proposals are laying the groundwork for the 2020 campaign and the next Congress in 2021.

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 House Energy and Commerce Health Subcommittee has held hearings on several bills to stabilize the ACA and to reverse some of the administration’s new regulations.

The Energy and Commerce Committee also will investigate short-term plans that do not cover certain health services.

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.

State legislatures in Vermont and North Carolina have proposals to regulate association health plans (AHP), which the Trump administration has approved as state alternatives to the ACA. The Kansas legislature is debating a bill to allow the state’s farm bureau to offer health plans that do not comply with the consumer provisions of the ACA. The New Mexico legislature has a bill to continue essential health benefits in policies sold in that state.

PKD advocates should monitor these and other 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.

On Feb. 26, the Senate Finance Committee held a hearing on drug pricing. The witnesses were executives from seven drug making companies.

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 Chairman 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.

On March 13, the House Energy and Commerce Health Subcommittee held a hearing on seven bills that would bring generic drugs to the market quicker. Proponents believe that competition with expensive brand name drugs will lower consumer costs. The National Health Council, of which PKDF is a member, testified in support of these efforts.  The hearing was the first step in a long legislative process.

Food and Drug Administration (FDA)

Dr. Scott Gottlieb has resigned as administrator of the FDA. During his tenure, Dr. Gottlieb implemented many of the provisions of the 21st Century Cures Act. He has worked to bring new gene and cell therapies to the public quicker and to hasten the approval of generic drugs. National Cancer Institute Director Ned Sharpless will serve as acting FDA director.

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.

Sens. Bill Cassidy (R-LA) and Michael Bennet (D-CO) are the key Senate players on this subject.  Rep. Lloyd Doggett (D-TX) has introduced HR 861 to deal with the problem. Many political and health analysts think that Congress may be able to pass legislation to deal with these bills.

Bills of Importance to the PKD Community

On Feb. 14, the Living Donor Protection Act, which would remove barriers to living organ donation, 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. PKD advocates may want to urge past supporters to again cosponsor this legislation.

New Cosponsors of HR 1224, the Living Donor Protection Act

  • Rep. William Hurd (R-TX-23)
  • Rep. Brian Fitzpatrick (R-PA-01)
  • Rep. Peter Visclosky (D-IN-01)
  • Rep. Ted Deutch (D-FL-22)
  • Rep. Seth Moulton (D-MA-06)
  • Rep. James McGovern (D-MA-02)
  • Rep. Andre Carson (D-IN-07)
  • Rep. Bill Foster (D-IL-11)
  • Rep. Earl Blumenauer (D-OR-03)
  • Rep. Gwen Moore (D-WI-04)
  • Rep. Ron Kind (D-WI-03)
  • Rep. Derek Kilmer (D-WA-06)
  • Rep. Dwight Evans (D-PA-03)
  • Rep. Joaquin Castro (D-TX-20)

New Cosponsors of S. 511, the Living Donor Protection Act

  • Sen. John Boozman (R-AR)

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

  • The OPEN Act would make it easier for companies to repurpose approved drugs for treating rare diseases.
  • The Immunosuppressive Drug Act

Once the bills are reintroduced, PKD advocates should urge past supporters to again cosponsor each bill.

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:  March 14, 2019