Washington Summary April 2019

The House and the Senate are in recess from April 15 through April 26.  We hope that you are taking advantage of this opportunity to schedule meetings with your elected representatives in their home offices.

FY20 Budget Request

Congressional committees are holding hearings on the administration’s fiscal year 2020 (FY20) budget.  The budget requests an appropriation of $33.5 billion for NIH, compared to $39.1 billion for the current fiscal year.

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 also has asked Congress for $2.165 billion for NIDDK.  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 increase access to health insurance.  Some would create a single-payer national program; others would expand Medicare or Medicaid.  Here are some of the major bills:

  • HR 1384, Medicare for All
  • S 470 and HR 1346, Medicare at 50
  • S 489 and HR 1277, buy-in option for Medicaid
  • S 981, Medicare X, allowing anybody to buy into Medicare
  • Medicare for America Act has not yet been introduced in 2019; it was HR 7339 in the previous Congress

On April 10, Sen. Bernie Sanders (I-VT) introduced an updated version of his bill from 2017.  S 1129, the Medicare for All Act, would create a single-payer insurance program run by the government and generally eliminate private health insurance. The new proposal also includes long-term care coverage, which Medicare does not now provide.

Besides the all-inclusive health insurance proposals, Congress may consider legislation to improve and protect the ACA.

On March 26, 79 House Democrats introduced HR 1884, Protecting Pre-Existing Conditions & Making Health Care More Affordable Act of 2019; the bill has 132 cosponsors at the time of this writing.   In brief, the bill seeks to improve the ACA and reverse the regulatory changes made by the Trump administration.  Here are some key provisions:

  • Lowers health insurance premiums by improving tax credits and allowing more middle-class individuals and families to qualify for subsidies;
  • Provides funding for reinsurance programs to help with high-cost claims and improve insurance plan stability.
  • Limits efforts to give states waivers to undermine protections for people with pre-existing conditions and to weaken standards for essential health benefits.
  • Stops the selling of health insurance plans that do not cover essential medical treatments and drugs and that can discriminate against people with pre-existing medical conditions.

A section-by-section explanation of HR 1884 may be found here.

On April 10, Sen. Thom Tillis (R-NC) and others introduced S 1125, the Protect Act.  According to its sponsors, the bill would guarantee the availability of health insurance coverage in the individual or group market, regardless of pre-existing conditions, prohibit discrimination against patients based on health status, and prohibit insurance companies from excluding coverage of treatments for a beneficiary’s pre-existing condition.

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

For specific information on the provisions in any of the bills mentioned above, go to congress.gov or to the sponsor’s official website at house.gov or senate.gov.

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.

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.

The administration has asked a federal appeals court to declare unconstitutional the entire ACA.  As indicated in past summaries, the case of Texas v Azar (also known as Texas v US) most likely will go before the US Supreme Court.

A federal district court has ruled that the administration exceeded its authority when the administration issued rules to expand the availability of association health plans (AHP).

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.

Maine’s governor signed a bill requiring insurance plans in that state to cover essential health benefits and to keep children on parents’ plans until age 26.  These provisions are part of the ACA.

The Montana and Ohio attorneys general are not supporting the Texas v US plaintiffs who want to declare unconstitutional all of the ACA.

Several other states, including Virginia, Georgia, New Hampshire, Delaware, Louisiana, Washington State, and Nevada, also are considering pertinent proposals.  Some make it easier for companies to sell short-term policies, to permit AHPs, or to waive essential health benefits.  Others would put the ACA’s consumer protection provisions into state law.

PKD advocates should monitor pertinent 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.

On April 3, the House Energy and Commerce Committee approved a number of 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 March in support of these efforts.

Other bills would reverse some of the administration’s actions that could hurt people with preexisting conditions.  The House has not yet considered these bills.

Food and Drug Administration (FDA)

National Cancer Institute Director Ned Sharpless is serving 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.

On April 2, a House Education and Labor subcommittee held a hearing to look at surprise medical bills and how to develop a response that would protect patients.  More than 30 business groups submitted a number of recommendations for Congress to consider.  They include setting a reimbursement rate of 125 percent of Medicare for emergency services at an out-of-network facility.  Another suggestion would require out-of-network providers who practice at in-network facilities to accept in-network rates.

Senate HELP Committee Chairman Lamar Alexander (R-TN) and ranking member Sen. Patty Murray (D-WA) have asked the Congressional Budget Office (CBO) to review the economic impact of several proposals that the committee may consider.  The key issue will be how much the insurer will pay a doctor or hospital, thereby limiting the patient’s responsibility for large, unexpected medical bills.

Orphan Drug Act Resolution

On March 18, Reps. GK Butterfield (D-NC) and Mike Bilirakis (R-FL) introduced H.Res. 242, which notes the importance of the Orphan Drug Act and expresses continued support for research and development activities on rare diseases.

Bills of Importance to the PKD Community

On February 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 co-sponsor this legislation.

New Cosponsors of HR 1224, the Living Donor Protection Act

  • Rep. Doris Matsui (D-CA)
  • Rep. Grace Meng (D-NY)
  • Rep. David Price (D-NC)
  • Rep. Clay Higgins (R-LA)
  • Rep. Bill Johnson (R-OH)
  • Rep. Bobby Rush (D-IL)
  • Rep. Adam Schiff (D-CA)
  • Rep. Maxine Waters (D-CA)
  • Rep. Bill Posey (R-FL)
  • Rep. Gerald Connolly (D-VA)
  • Rep. Jamie Raskin (D-MD)
  • Rep. Jefferson Van Drew (D-NJ)
  • Rep. Suzan DelBene (D-WA)
  • Rep. Chellie Pingree (D-ME)

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

  • Sen. Chris Coons (D-DE)

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.


UPDATED:  April 11, 2019