Washington Summary June 2019

Next Few Weeks

The key issue will be establishing overall spending levels for defense and nondefense spending for the fiscal year that begins on October 1, 2019. Those levels will determine funding for, among other things, health research activities that impact PKD patients.

Fiscal Year 2020 Budget

Congressional committees continue to work on the 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 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.

PKD Foundation 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.

On June 19, the House passed a bill (HR 2740) that would provide $41.084 billion for NIH in FY20, an increase of about $2 billion over the current level. NIDDK would receive $2.129 billion, about a five percent increase above the FY19 level of $2.030 billion. Within NIDDK, the Kidney X project would receive $10 million.

The Senate Appropriations Committee has not begun drafting its appropriations bills.

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. Some bills would eliminate private insurance (even policies provided now by employers; others would retain some private plans). The devil is in the details.

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
  • S 1129, Medicare for All
  • HR 1884, Protecting Pre-Existing Conditions & Making Health Care More Affordable
  • S 1125, the Protect Act
  • HR 2452, Medicare for America Act
  • S 1261, Choose Medicare Act

On June 12, the House Ways & Means Committee, one of the two House panels that draft health legislation, held a hearing on Medicare for All. The hearing produced no consensus.

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.

Some information may be found in a previous Monthly Summary. 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.

On June 13, the Trump administration issued another rule to expand health insurance options for small businesses and others. The rule allows employers to use tax-exempted Health Reimbursement Arrangements (HRAs) to allow workers to purchase coverage in the individual market. These insurance policies may comply with the ACA or may be policies that lack the ACA’s consumer protection provisions.

On June 24, President Trump signed an executive order that seeks to provide patients with cost information to better understand future medical costs. The administration hopes that the new policy will give patients information on their future out-of-pocket costs. HHS and CMS will draft rules to implement the policy

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.

House Democrats cannot agree on the best approach to reduce out-of-pocket drug cost. Some want Medicare to negotiate directly with drug makers; others prefer a more modest program affecting only a select number of expensive drugs. Any bill that the House passes will face a difficult time in the Republican-controlled Senate.

The Senate Judiciary Committee, which has jurisdiction over the patent law, recently approved several bills that could impact drug pricing. Current patent law makes it difficult for lower-cost generic drugs to enter the marketplace. For example, S. 1416, the Affordable Prescriptions for Patients Act, would prohibit anticompetitive behaviors by drug manufacturers.

Surprise Medical Bills

The administration and Congress are studying ways to protect patients that receive unexpected medical bills. Generally, the bills occur when an insured patient receives care from a doctor or facility that is not within the insurance company’s provider network. Neither Congress nor the White House want patients to pay these bills. 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.

Senate HELP Committee Chairman Lamar Alexander (R-TN) and ranking member Sen. Patty Murray (D-WA) introduced the bipartisan Lower Health Care Costs Act (S. 1895) that would end surprise medical bills and increase drug competition to reduce drug prices. Hospitals and providers have issues with the surprise bill payment language, which does not impact the patient directly. On June 26, the Committee approved the bill by a vote of 20-3. The Senate Finance Committee is working on its own health care bills that seek to reduce drug prices.

On June 12, the House Energy & Commerce Health Subcommittee heard from a number of witnesses on the Subcommittee’s draft bill to protect patients from these bills.

State Activities

Most state legislatures have completed their 2019 sessions. Here is some recent activity:

Louisiana has a new law to protect its residents who have preexisting conditions even if the ACA is found unconstitutional. The new law prohibits the denial of healthcare insurance for preexisting conditions; eliminates lifetime limits and prohibits annual limits on essential benefits; and ensures that any healthcare plan provide for essential health benefits.

Summer Break for Congress

Both the House and Senate will take their annual summer break in August through Labor Day. Many representatives and senators will be hold constituent or political events during this period. Now is the time to contact their offices and request a meeting to discuss PKD issues.

For information on PKDF’s issues this year, go to pkdfoundation.staging.wpengine.com/pkd-advocacy/

For information on how to schedule and conduct a meeting with your elected officials, go to pkdfoundation.staging.wpengine.com/advocacy/tools/

Bills of Importance to the PKD Community

The Living Donor Protection Act, which would remove barriers to living organ donation, was introduced in both the House and Senate. Reps. Jerrold Nadler (DNY) 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. Albio Sires (D-NJ)
  • Rep. Chris Pappas (D-NH)
  • Rep. Jared Huffman (D-CA)
  • Rep. Harley Rouda (D-CA)
  • Rep. Jackie Wolarski (R-IN)
  • Rep. Joe Courtney (D-CT)
  • Rep. Susan Davis (D-CA)

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

  • Sen. Ben Cardin (D-MD)
  • Sen. John Barrasso (R-WY)

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: June 28, 2019