Washington Summary July 2019

House and Senate on Recess

By August 5, the House and Senate will have started their annual summer through Labor Day.  Many representatives and senators will hold constituent or political events during this period.  There still may be time to contact offices and request a meeting to discuss PKD issues.

For information on scheduling a meeting and our legislative priorities, check out this blog post.

Budget Deal

In late July, Congress and the White House reached an agreement on spending levels for the next two fiscal years.  The deal increases both defense and domestic spending above the levels contained in a previous budget law.  The deal also suspends the need to increase the federal debt limit, thereby allowing the US Treasury to continue to pay past bills for federal program.  The additional domestic funds might mean increased funding for, among other programs, health research activities that impact PKD patients. Read our blog here to better understand the federal budget process.

Fiscal Year 2020 Appropriations

The Senate Appropriations Committee had been waiting for the overall budget figures before drafting its 12 funding bills.  When it returns in September, the Committee quickly will write those bills.

In June, 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 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 Congressionally Directed Medical Research Program known as CDMRP.

Congress needs to approve the 12 bills before the beginning of Fiscal Year 2020 on October 1.  If the full year of funds are not provided by that time, Congress most likely will approve a continuing resolution (or CR) that will fund activities at the current lower dollar figure.  Barring continued funding, a shutdown of certain programs remains a possibility.

American Kidney Health Initiative

On July 10, the administration announced its American Kidney Initiative to improve the lives of people with chronic kidney diseases (CKD), including PKD.  In brief, HHS and CMS will issue rules to provide incentives to physicians to earlier detect and treat CKD; shift dialysis treatments to home dialysis; provide financial incentives to potential living donors; and improve the organ procurement process.

For a full recap and how this will impact the PKD community, please read our statement here.

One item missing would require legislation by Congress:  to make permanent Medicare coverage for immunosuppressive drugs for kidney transplant patients.  A bill to authorize such coverage may be introduced later this year.

Improve Transplant Opportunities

Sen. Todd Young (R-IN) has introduced S 2063, the Organ Procurement Optimization Act.   The bill seeks to provide more transplant organs by improving the procedures of organ procurement organizations (OPOs). The bill would require HHS to establish strict and verifiable criteria to assess OPO activities.  Currently, OPOs self-report their actions. Today, nearly 100,000 Americans await a kidney transplant, and every day 13 Americans die waiting for a kidney transplant.

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

Nobody expects the Senate to consider any major health insurance measure that the House may not 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.

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 plan to release their proposal to reduce out-of-pocket drug costs in early September.  Details have not been made public.  According to some reports, the bill would authorize Medicare to negotiate drug prices and would impose tough standards on drug manufacturers.  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.

In May, the administration directed drug makers who advertise on TV to provide price data on certain drugs covered by Medicare and Medicaid.  This information, it was hoped, would force the manufacturers to lower the price of high-cost prescription drugs.  On July 8, however, a federal court held that HHS lacked the legal authority to compel such price information.  Sen. Charles Grassley (R-IA) and Dick Durbin (D-IL) have introduced legislation that would permit this price disclosure.

The administration also is working on a rule creating a limited pilot program to allow certain entities to import safe prescription drugs from Canada.  Few details about which drugs would be covered and when the program would begin have been released at this time.

On July 25, the Senate Finance Committee completed action on its own bill that seeks to reduce drug price increases covered by Medicare Parts B and D and Medicaid.  One key provision would cap out-of-pocket costs for a person purchasing drugs under Part D at $3100 a year.   Several contentious issues remain unresolved.  For example, many senators oppose a limit on annual drug price increases.  Other senators want to give Medicare the ability to negotiate drug prices (which the VA does now) and to retain preexisting condition protections for patients.

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 will not debate S. 1895 until September at the earliest.

On July 17, the House Energy & Commerce Committee approved HR 2328, which included the language of HR 3630, the No Surprises Act.   Under this bill, patients would be protected from surprise bills for services the patient believed to be covered by their health insurance policy and network.  One issue still remains controversial:  if the patient doesn’t pay the balanced bill charge, then who pays and how much.  Hospitals, doctors and other providers, and the insurance industry want different procedures to resolve disputed surprise bills.  One issue that the bill does not address is a surprise bill for ground ambulances, many of which are operated by county or local governments.

The House Education and Labor Committee, which has jurisdiction over multi-employer health plans, still needs to consider HR 2328.

“Cadillac Tax” Repeal Effort

On July 17, the House passed HR 748, a bill to repeal the ACA excise tax on certain health plans.  The tax would apply to high-cost employer-provided plans effective in 2022.  The tax was drafted to help pay for the ACA’s benefits and would have raised nearly $197 billion over 10 years if it had been implemented.  The insurance industry and labor organizations have opposed the Cadillac tax, fearing that the tax would increase costs for participants of the impacted plans.  Twice in the past Congress has voted to delay its implementation.  How the Senate may act on HR 748 remains to be determined.

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 Cosponsors of HR 1224, the Living Donor Protection Act

Rep. Debbie Mucarsel-Powell (D-FL)

Rep. John Yarmuth (D-KY)

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

Sen. Marco Rubio (R-FL)

Sen. Martha McSally (R-A)

Sen. Marsha Blackburn (R-TN)

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:  August 1, 2019