Washington Monthly Summary April 15 – May 31, 2019

Topics Covered
  1. Fiscal Year 2020 Federal Budget
  2. Health Care/Health Insurance
  3. Drug Pricing
  4. Surprise Medical Bills
  5. Important Legislation
  6. Advocacy Alerts

FY20 Budget

A key unresolved issue before Congress will be establishing overall spending levels for defense and non-defense spending for the fiscal year that begins on October 1, 2019. Those levels will determine funding for, among other things, medical research activities that impact PKD patients.

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.

The House Appropriations Committee has approved 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. This is the first step in a long process.

The Senate Appropriations Committee should draft its bill in June.

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
  • 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

The Congressional Budget Office (CBO) released a report on the policy and financial issues that Congress will have to address when considering a single-payer national health insurance system. The report explained a number of challenges in this area. Among its many issues, the report discussed systems in foreign countries, the types of services that an American system might cover, and the financing of a new health care system. For more information, go to cbo.gov.

The House Rules Committee held a hearing on Medicare for All. The House Budget Committee held its hearing on May 22. CBO officials reiterated their conclusions that savings and benefits will depend on the specifics of a single-payer health bill that Congress approves.

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.

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. On May 16, the House passed HR 987, the Strengthening Health Care and Lowering Prescription Drug Costs Act. HR 987 combined seven bills covering two areas: the ACA and drug prices. The bill increases subsidies for the ACA marketplace and rejects the Trump administration’s regulations that expanded short-term and association health insurance plans. Other provisions seek to bring generic and biosimilar drugs to the marketplace sooner.

In late May, the leaders of the Senate HELP Committee—Chairman Lamar Alexander (R-TN) and Sen. Patty Murray (D-WA)—released a discussion draft of a bill that covers several import health issues. The draft contains provisions dealing with surprise medical bills, prescription drug prices, and other health care issues. A summary of the draft’s provisions may be found at help.senate.gov.

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). That decision will be appealed.

State Action on Health Insurance

Most state legislatures have completed or soon will complete their 2019 legislative sessions. Those still meeting may be considering bills dealing with health insurance and drug prices.

Here are some recent state actions:

  • Washington State has a new law that will protect the ACA’s consumer protection provisions in policies sold in that state.
  • Starting in 2012, Washington State residents will have a public option for health insurance.
  • The Florida Legislature approved bills to allow the sale of short-term policies and to permit association health plans.
  • Virginia’s governor vetoed bills that would permit association health plans and farm bureau-sponsored plans.
  • The Kansas Farm Bureau now has the ability to offer health insurance policies that do not have to comply with state insurance protections.

PKD advocates should monitor pertinent activities in their state capitals.

Drug Pricing

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.

On May 8, the House passed two bills (HR 1520 and HR 1503) that would make it easier for generic and biosimilar companies to get information they need to bring their products to the marketplace.

The administration has approved a rule requiring televised drug ads to include list prices for the medication costing more than $35 for a month’s supply. Some drug makers are expected to challenge the rule in court.

Sens. Mitt Romney (R-UT) and Mike Braun (R-IN) have introduced a bill (S 1384) that may lower out-of-pocket costs for drugs. Under the bill, coinsurance would be based on the drug’s cost after rebates and other negotiated discounts rather than on the drug’s list price.

Sens. Tammy Baldwin (D-WI), Mike Braun (R-IN), Lisa Murkowski (R-AK), and Tina Smith (D-MN) introduced S 1391, the FAIR Drug Pricing Act. The bill requires drug makers to justify with data price increases of more than 10 percent on drugs costing more than $100. Reps. Jan Schakowsky (D-IL) and Francis Rooney (R-FL) introduced the same bill (HR 2296) in the House.

On May 23, the bipartisan leaders of both the House Ways & Means Committee and House Energy & Commerce Committee released a draft bill that would limit out-of-pocket costs for beneficiaries who use the Medicare Part D drug program. Further information may be found on the Ways & Means website at house.gov.

Surprise Medical Bills

The administration and Congress are studying ways to protect patients that receive unexpected medical bills, sometimes for charges the patient did not even realize they were incurring. 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.

Bipartisan groups of Congressmen and Senators separately are drafting proposals to resolve the problem. Most of the ideas include a form of arbitration, if the providers (doctors and hospitals) and insurers cannot reach a payment settlement.

Senate HELP Committee Chairman Lamar Alexander (R-TN) and ranking member Sen. Patty Murray (D-WA) asked the Congressional Budget Office (CBO) to review the economic impact of several proposals that the committee may consider. As mentioned above, the two senators have their own proposal that would cover surprise bills.

Other senators are working on their own proposals. Sens. Bill Cassidy (R-LA) and Michael Bennet (D-CO) have a proposal that would ban surprise bills for emergency care. Disputes between providers and insurers would be resolved through arbitration.

House Energy and Commerce Chairman Frank Pallone (D-NJ) and ranking member Greg Walden (R-OR) have a draft bill that would prevent providers from billing patients for unpaid emergency services. The draft would create a minimum payment based on geographic location to resolve billing disputes between providers and insurers.

Reps. Phil Roe (R-TN) and Raul Ruiz (D-CA), both of whom are doctors, have outlined surprise billing legislation that includes arbitration between providers and insurers.

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. Ed Case (D-HI)
  • Rep. Angie Craig (D-MN)
  • Rep. Jim Himes (D-CT)
  • Rep. Donald Payne, Jr. (D-NJ)
  • Rep. Cedric Richmond (D-LA)
  • Rep. Eric Swalwell (D-CA)
  • Rep. Lisa Blunt Rochester (D-DE)
  • Rep. French Hill (R-AR)
  • Rep. Tom Malinowski (D-NJ)
  • Rep. Joe Neguse (D-CO)
  • Rep. Jan Schakowsky (D-IL)
  • Rep. Conor Lamb (D-PA)
  • Rep. Yvette Clarke (D-NY)
  • Rep. Frederica Wilson (D-FL)
  • Rep. Mark Pocan (D-WI)
  • Rep. Darren Soto (D-FL)
  • Rep. Mike Kelly (R-PA)
  • Rep. Mike Quigley (D-IL)
  • Rep. Eleanor Holmes Norton (D-DC)
  • Rep. Abigail Davis Spanberger (D-VA)
  • Rep. Stephen Lynch (D-MA)
  • Rep. Matt Cartwright (D-PA)
  • Rep. Kathleen Rice (D-NY)
  • Rep. Joe Kennedy (D-MA)
  • Rep. Liz Cheney (R-WY)
  • Rep. David Trone (D-MD)
  • Rep. Ruben Gallego (D-AZ)
  • Rep. Brian Mast (R-FL)
  • Rep. Zoe Lofgren (D-CA)

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

  • Sen. Sherrod Brown (D-OH)
  • Sen. Kevin Cramer (R-ND)
  • Sen. Richard Blumenthal (D-CT)
  • Sen. Angus King (I-ME)
  • Sen. Ed Markey (D-MA)
  • Sen. Jacky Rosen (D-NV)

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: PKD Foundation has joined the Honor the Gift Coalition, whose focus is getting this bill introduced and passed in 2019. Progress continues to be made on this effort.

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

Advocacy Alerts

When the time comes, we will ask PKD advocates to immediately contact their elected officials to protect your interests. Be sure to sign up to receive these alerts! Your voice needs to be heard.