Washington Summary September 2019

Fiscal Year 2020 (FY20) funding 

The Senate Appropriations Committee is drafting its 12 funding bills. Congress needs to approve the 12 bills before the beginning of Fiscal Year 2020 (FY20) on September 30.

The Senate Committee has approved its funding bill for the Department of Defense (S. 2474). That bill includes $350 million for Peer Reviewed Medical Research Programs, which provides grants for a number of eligible health research programs. This bill includes PKD in the list of eligible programs for FY20.

The Senate Appropriations Committee did not take formal Committee action on the FY20 Labor/HHS/Education bill. However, it released a bill that would provide $42.1 billion for the NIH, an increase of $3 billion over current funding. Within NIH, the bill appropriates $2.032 billion for the NIDDK.

The Senate will include four bills, including Defense and Labor/HHS, in a package known as a “minibus.” Earlier this year, the House approved its own minibus bill (HR 2740) that appropriated FY20 funds for Defense and Labor/HHS.

To prevent a potential government shutdown, Congress passed HR 4378, which continues funding for all government programs until November 21, 2019, a week before Thanksgiving.

Congress and health insurance 

The phrase “Medicare for All” continues to receive 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

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 continue 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 is working on a health insurance plan that President Trump is expected to announce in September. According to one report, the administration is considering expanding health savings accounts and allowing the sale of health insurance across state lines.

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 September 19, Speaker Nancy Pelosi (D-CA), on behalf of House Democrats, released a proposal to reduce out-of-pocket drug costs. The bill now is HR 3, Lower Prescription Drug Costs Now Act. In brief, the bill would allow — but not require — the HHS secretary to negotiate the price of up to 250 drugs per year that lack competitive alternatives; the negotiated price would apply to Medicare and private insurance programs. The maximum price would be no more than 120 percent of the average price of the drug in several foreign markets; this is similar to a proposal advanced by the administration. Any drug company that refuses to negotiate would face a huge tax on the drugs’ gross sales.

The bill also would cap out-of-pocket prescription drug costs for seniors at $2000 per year. Drug companies that increase their prices by more than the inflation rate would have to lower the prices or rebate money to the US Treasury.

Additional information on HR 3 and other proposals to lower prescription drug costs can be found here.

The House is expected to vote on the Democratic bill in late October or early November. Senate Majority Leader Mitch McConnell (R-KY) has indicated that the Senate will not consider this proposal even if the House passes it. 

On September 25, Senate Finance Committee Chairman Charles Grassley (R-IA) and ranking member Sen. Ron Wyden (D-OR) released their drug pricing bill: S. 2543, the Prescription Drug Pricing Reduction Act.  The bill covers three major areas: 

  • The bill would fine pharmaceutical companies for price increases greater than the rate of inflation; 
  • It caps out-of-pocket drug costs for Medicare Part D patients at $3100 a year; coverage then switches to the existing “catastrophic” provision under which the patient pages five percent of the drug’s cost; and 
  • Unlike HR 3, the Finance Committee proposal does not give CMS/Medicare authority to negotiate drug prices. 

Additional information on the Committee’s proposal may be found here.

The administration is drafting regulations that would allow states to import prescription drugs as an effort to lower prices for patients. At this time, Florida is the only state planning to take advantage of the proposed importation policy. 

In August, the administration clarified restrictions on the use by patients of drug companies’ copay coupons. In 2020, health insurance companies could exclude these coupons from counting against a patient’s annual out-of-pocket payments for prescription drugs. 

States and health insurance 

North Carolina has a new law allowing associations to provide non-traditional health insurance plans that may not include the ACA’s essential health benefits. The bill became law without the signature of Gov. Roy Cooper. 

Delaware Governor John Carney signed a bill that would place the ACA’s preexisting conditions provisions into state law. 

The Trump administration approved Rhode Island’s request to create a state individual health reinsurance fund. The state believes that the fund will reduce individual insurance premiums and increase enrollment in 2020. 

Surprise medical bills 

In response to the July bill approved by the House Energy & Commerce Committee, the House Ways & Means Committee is drafting its own bill to protect patients from surprise medical bills. The main contentious issue is how to resolve payment disputes between health insurance companies and providers (hospitals, physicians, etc.) and how to deal with air ambulance bills. 

PKD Recognition Day 

Sens. Roy Blunt (R-MO) and Ben Cardin (D-MD) introduced S. Res. 356, a resolution to recognize September 4 as “National Polycystic Kidney Disease Recognition Day.” 

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 (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 cosponsor of S. 511, the Living Donor Protection Act 

Sen. Chris Van Hollen (D-MD) 

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:  October 4, 2019