Washington Summary November 2018

Congress reconvened on Nov. 13. Between now and the end of the year, Congress needs to complete work on several appropriations bills, none of which have a direct impact on PKD patients.

Post-Election Update

Democrats will control the House of Representatives in 2019. Republicans will maintain their Senate majority.

Several of the committees that deal with issues of importance to PKD patients will have new leaders next year. Some positions (such as the chairs and ranking members of important subcommittees) will not become official until after the 116th Congress convenes in January. These committees will work on health insurance coverage, drug prices, research funding, and related issues.

Here is the best available information:

Senate Appropriations Committee—Sen. Richard Shelby (R-AL), chair; Sen. Patrick Leahy (D-VT), ranking Democrat.

Senate HELP Committee—Sen. Lamar Alexander (R-TN), chair; Sen. Patty Murray (D-WA), ranking Democrat.

Senate Finance Committee—chair to be determined (TBD) but Sen. Charles Grassley (R-IA) is next in seniority; Sen. Ron Wyden (D-OR), ranking Democrat.

House Appropriations Committee—Chair Rep. Nita Lowey (D-NY); ranking Republican TBD.

House Energy and Commerce Committee—Rep. Frank Pallone (D-NJ) chair; Rep. Greg Walden (R-OR), ranking Republican.

House Ways and Means Committee—Rep. Richard Neal (D-MA), chair; Rep. Kevin Brady (R-TX), ranking Republican.

Affordable Care Act (ACA), Essential Health Benefits, and Pre-existing Conditions

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. Cheaper plans with limited coverage will reduce the number of people in the ACA-compliant risk pool. That could mean fewer choices and higher premiums if the short-term and association health plans exclude people with preexisting conditions or restrict medicine and services that preexisting patients need.

Congress has taken no action to repeal ACA (or Obamacare). In October, Senate majority leader Mitch McConnell (R-KY) indicated that the Senate again might consider a bill to repeal ACA. On Nov. 7, however, Sen. McConnell indicated that legislation to change ACA would have to occur in consultation with Democrats.

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 actions focus on association health plans (AHP) and short-term (less than one year) insurance plans. For more details, see previous Monthly Summaries.

In late October, the administration issued additional guidance that will make it easier for states to seek ACA waivers. The guidance will allow a state to offer health plans that do not provide the same level of coverage as ACA and will permit higher premiums for people with pre-existing conditions. Also, only a state’s governor and not the state legislature will have to approve the waiver plans.

Land O’Lakes, the Midwest agricultural cooperative, plans to offer an AHP initially to farm co-ops and dairy farmers in Minnesota and Nebraska. Land O’Lakes states that its plans will cover pre-existing conditions and will provide essential health benefits, such as hospitalization and outpatient services.

Some states continue to take actions to counter the administration’s efforts. In September, California Governor Jerry Brown signed into law a bill that all but eliminates AHP’s in that state. Governor Brown also signed a bill barring short-term plans in that state. Washington State will limit short-term plans to three months and will retain many of ACA’s consumer protections.

On Oct. 10, the Senate defeated a proposal to overturn the expansion of short-term plans. The vote was 50-50. Under parliamentary rules, a proposal cannot be approved on a tie vote.

On Nov. 1, the Iowa Farm Bureau began offering “health benefit plans” as an alternative to regular health insurance. Since regular insurance regulations do not cover such plans, Iowans with pre-existing conditions could be refused coverage or charged more for these plans.

In October, the administration made it easier for states to promote individual health plans that do not require the same level of coverage as ACA. The new state plans could charge higher premiums for people with pre-existing conditions. Also, only governors and not state legislatures will have to approve the waiver plans. Many health analysts and advocates fear that states will use this new authority to encourage younger and healthier people to leave ACA plans. That would reduce the risk pool for ACA plans and increase costs for those (mainly people with preexisting conditions) whose only option are ACA plans.

The lawsuit (Texas v. Azar) suggesting that all of ACA is unconstitutional also could impact people with employer-provided health insurance. Before ACA, employers could withhold health coverage for up to one year for people with preexisting conditions if the employee did not have “continuous coverage.” If the court declares ACA unconstitutional, that situation may return. The Supreme Court ultimately may determine ACA’s fate.

Drug Prices

Many PKD patients need prescription drugs to deal with symptoms associated with their kidney disease. Medicare, group insurance through employment, or private insurance plans may cover a portion of the high cost of some of these drugs.

In late September, Congress passed two related bills (S. 2553 and S. 2554) remove “gag clauses” that up to now prevented pharmacists from telling people that paying for drugs out of pocket may be cheaper than relying on insurance coverage. Those bills became law on Oct. 10. The bill ending the gag clause on Medicare Part D drug prices will take effect in January 2020.

The administration is taking regulatory action that it claims will reduce drug prices. In October, HHS issued a proposed rule that would require drug makers to place price information in ads directed to consumers. The data will have to include the monthly cost for a typical course of treatment if it is greater than $35 for 30 days. The ads also would have to indicate that patients with health insurance may have to pay a different amount.

On Oct. 25, President Trump announced his proposal to reduce drug prices under Medicare Part B, which covers outpatient services (at hospitals, doctors’ offices, clinics) and specific preventative procedures. The proposal seeks to negotiate lower drug prices and change the formula for paying doctors who prescribe covered drugs. Based on the released information, the proposal does not include the cost of prescription drugs covered by private insurance.

The administration also is drafting a drug price rule to reduce Medicare Part D prices. Specific provisions have not been made public at this time.

Living Donor

New York Governor Andrew Cuomo has signed the Living Donor Protection Act (S2496B). The new law will prohibit insurance discrimination because of the New Yorker’s status as an organ donor. Donors also would be covered by New York’s paid family leave laws. The New York law is similar to the federal legislation mentioned below.

Bills of Importance to the PKD Community

  • Living Donor Protection Act (HR 1270/no Senate bill yet) would remove barriers to living organ donation. Rep. Jerrold Nadler (D-NY) and Rep. Jaime Herrera Beutler (R-WA) introduced the bill. PKD and several other patient groups have signed a letter urging House Members to cosponsor HR 1270.
  • The OPEN Act (HR 1223/ S 1509) would make it easier for companies to repurpose approved drugs for treating rare diseases. Reps. Gus Bilirakis (R-FL), GK Butterfield (D-NC), and Mike McCaul (R-TX) introduced HR 1223. Sens. Orrin Hatch (R-UT) and Robert Menendez (D-NJ) introduced S 1509.

Say Thanks to Supporters

The following Senators and Members of Congress have cosponsored either the OPEN Act or the Living Donor Protection Act since the previous newsletter. If any of them represent you, please say “thank you” the next time that you contact them.


HR 1270, Living Donor Protection Act

  • Rep. Seth Moulton (D-MA)
  • Rep. Emanuel Cleaver (D-MO)

HR 1223, OPEN Act

Rep. David Price (D-NC)

Stay Alert

When the time comes, we will ask PKD advocates to contact their elected officials to protect your interests immediately. Your voice needs to be heard.

UPDATED:  November 9, 2018

PUBLISHED: 1:18 p.m. Nov. 19