The American Kidney Fund (AKF) had a busy first half of the year in our advocacy activities, particularly on the issue of charitable premium assistance at both the federal and state level. AKF relies on the voices of our advocates in demonstrating the important role that charitable premium assistance plays in ensuring access to health coverage for low-income kidney disease patients. Policymakers and their staffs need to hear your story—whether you are a dialysis patient, a transplant recipient, a kidney donor, a caregiver, or a family member or friend of a kidney patient.

Our advocacy work so far this year could not have been done without the commitment of our advocates, and we greatly appreciate it. But we have a lot more work to do. The following is a reminder of the ways you can get involved in AKF advocacy:

  • Join the Advocacy Network (or get friends and family to join)
  • Send action alerts to your members of Congress so they know to support important legislation affecting
  • Join our AKF Advocates Facebook Group where you can find a community of advocates and interesting content specifically tailored to folks like you!
  • Send letters to the editor to your local news sources so the general public and elected officials are aware of kidney disease issues

Update on California Legislation on Third-Party Payments

Since being introduced in March, AKF has focused a good deal of time and effort opposing a California bill, SB 1156, which would limit the ability of nonprofit charitable organizations like AKF to provide financial assistance to California dialysis patients who are unable to afford their health coverage. The bill passed the California Senate on May 30; an amended version of the bill then passed the Assembly Health Committee on June 26. The Senate-passed version of the bill required AKF, as a condition of being allowed to make a third party premium payment, to submit an annual statement to the insurer and the Department of Insurance (DOI) attesting that each recipient of premium assistance has applied and been determined ineligible for Medi-Cal coverage, and attesting to whether they would be eligible for Medicare. In addition, AKF would have to provide notice to the insurer and DOI at least 60 days prior to making the initial premium payment for each recipient.

After the bill’s passage in the Senate, it moved to the Assembly for a hearing and a vote in the Health Committee on June 26. The committee chairman significantly amended the bill prior to the hearing. The amended bill eliminated the requirement that patients receiving charitable premium assistance must not be eligible for Medi-Cal or Medicare, eliminated the 60-day notice requirement, and added language that protects patients from balance billing. Unfortunately, while the Assembly Health Committee made many of the changes we requested, the bill essentially became a rate-setting bill because it says that “financially interested” providers, which would include dialysis providers who contribute to HIPP, would only receive Medicare reimbursement rates, even for patients on private insurance who receive assistance from HIPP.  Therefore, we have serious concerns that the legislation may lead to unintended consequences that may affect patients’ access to dialysis care, particularly in urban and rural parts of the state.  It also provides rather perverse incentives for provides not to contribute to HIPP since their reimburse rates would be higher if they did not do so.

The legislation is supported by the SEIU California State Council and Blue Shield of California, both of which have an obvious financial interest in removing expensive patients from their insurance rolls.

AKF’s advocacy efforts have included press releases, an action alert to our advocates, a landing page on our website about SB 1156, op-eds, interviews with local California press, testifying before the Senate and Assembly Health Committees, and conducting many in-person meetings with state lawmakers and their staff. We held our first state fly-in on June 11-12, where we brought California HIPP grant recipients to Sacramento to meet with their Assembly members and staff to tell their story and explain how AKF has helped them maintain their health coverage.  We also held a rally in front of the state capitol where patients shared their stories of living with kidney disease and voiced their opposition to SB 1156. 

The amended bill passed the Assembly Health Committee and the Assembly Appropriations Committee. We have urged the Assembly to carefully analyze the potential ramifications of this bill in its current form before it comes to the Assembly floor; however, we do expect the bill to pass.   We are also pursuing a veto strategy and are focused on outreach to Governor Brown’s office, and the Departments of Insurance and Managed Health Care.

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Advocating for Comprehensive Kidney Legislation

AKF staff participated in Kidney Care Partners (KCP) Capitol Hill advocacy day on June 13. KCP is a coalition of patient advocates, dialysis professionals, care providers and manufacturers dedicated to working together to improve quality of care for individuals with kidney disease. Working along fellow members of KCP, AKF staff met with congressional offices to lobby support for the Chronic Kidney Disease Improvement in Research and Treatment Act (H.R. 2644/S. 1890). This comprehensive kidney legislation would expand and enhance current research efforts related to chronic kidney disease, make technical fixes to the Medicare ESRD prospective payment system, make improvements to ESRD quality programs, and empower patient decision-making and choice by guaranteeing access to Medigap plans for all ESRD patients and allowing ESRD patients to enroll in Medicare Advantage plans starting in 2020, instead of 2021 as under current law.

Charitable premium assistance was also discussed in these meetings with congressional offices, as we asked members to co-sponsor H.R. 3976, the Access to Marketplace Insurance Act, and thanked others for their co-sponsorship. Currently, the bill has 171 co-sponsors.

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HHS Launches KidneyX

The Department of Health and Human Services (HHS) has officially launched its Kidney Innovation Accelerator, also known as KidneyX. First announced last fall, KidneyX is a public-private partnership to accelerate innovation in the prevention, diagnosis and treatment of kidney diseases. KidneyX seeks to do this by providing prize funding to promising innovators; encouraging better coordination across HHS agencies to help clarify the path toward commercialization of new drugs and technologies; and creating a sense of urgency to develop new therapies to treat kidney disease.

The first pilot prize announcement in which KidneyX will be accepting applications is expected in October.

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Final Rule on Association Health Plans

The U.S. Department of Labor (DOL) published a final rule on association health plans (AHP) that facilitates the wider adoption and administration of AHPs. The final rule largely adopts changes included in the January proposed rule, which will make it easier for small business owners, their employees, sole proprietors and other self-employed people to join together and create an AHP and be treated as a large group plan, which would exempt them from certain Affordable Care Act (ACA) requirements such as providing the essential health benefits.

AKF submitted a comment letter that expressed our significant concerns with the proposed rule, including our belief that expanding the use of AHPs would potentially weaken the level of meaningful health coverage available to individuals with a chronic disease, as these plans seek to offer less comprehensive coverage that excludes benefit categories required for ACA-compliant plans. AKF and other stakeholders, including insurers, actuaries and patient advocacy groups, also warned that AHPs could siphon off healthier workers, leading to higher premiums in small group and individual markets. Some business groups supported the rule, arguing that it will give employers more flexibility in coverage options at lower costs.

Following the release of the final rule, a coalition of attorneys general from 11 states and the District of Columbia filed a federal complaint against the administration over the regulation. The suit charges the final rule violates the Administrative Procedures Act, the ACA and the Employee Retirement Income Security Act (ERISA), and asks the court to vacate the rule. The complaint also argues the intent of the regulation is to undermine the ACA, and that could harm consumer protections.

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Final Rule on Short-Term Plans

HHS, along with DOL and the Department of Treasury, released a final rule on short-term, limited duration insurance. The final rule allows short-term plan policies to be offered for up to 12 months (technically 364 days), and allows consumers to renew those plans for up to three years. The new rules take effect 60 days from the August 1 release of the final rule, meaning they will be in effect by the start of the ACA open enrollment season on November 1. Previously, short-term plan policies were limited to less than three months and were not renewable.  

Short-term plans are an insurance product that pre-date the ACA and were intended to serve as temporary coverage when a consumer experienced a gap in coverage (for example, when in between jobs). However, short-term plans do not have to comply with ACA market reforms, which means insurers offering these policies can medically underwrite them, exclude coverage for preexisting conditions, exclude coverage for entire essential health benefit categories, rescind coverage, impose annual and lifetime limits, and impose higher out-of-pocket cost sharing than is allowed for ACA-compliant plans. In addition, short-term plans are not subject to the ACA single risk pool requirement or risk adjustment program. Given this, short-term plans are relatively cheaper than ACA-compliant plans and tend to attract younger and healthier individuals.

The administration believes expanding the availability of short-term plans will provide more affordable coverage options for consumers. However, there are significant concerns that increased availability of short-term coverage will siphon off healthier consumers, segment insurance markets, and increase premiums for those enrolled in ACA-compliant plans. Also, individuals enrolled in short-term plans may be at risk for financial hardship if they get sick and find that their condition is not covered under their policy or face much higher out-of-pocket costs than if they were enrolled in a comprehensive ACA plan. Various health care stakeholders have raised these concerns, including insurers, consumer groups, disease organizations, and actuaries. AKF submitted a comment letter on the proposed rule that echoed these concerns, and we opposed the rule due to the adverse impact it would have on access to affordable, comprehensive coverage for individuals with chronic conditions and the instability it will cause in the ACA marketplaces.

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Medicare ESRD Prospective Payment System and Quality Incentive Program Proposed Rule

The Centers for Medicare and Medicaid Services (CMS) published their annual rule that proposes updates to the Medicare ESRD Prospective Payment System (PPS) for calendar year 2019, and proposes changes to the Medicare ESRD Quality Incentive Program (QIP) for payment years 2021, 2022 and 2024. Comments are due September 10. AKF will be submitting a response and will focus our comments and recommendations on ensuring patient access to dialysis treatment and high-quality care.

A summary of the proposed updates to the PPS and QIP can be found in this fact sheet from CMS. In addition to those proposed changes, CMS is soliciting stakeholder input on ways to increase kidney transplant referrals, improve the tracking process for patients on the transplant waitlist, and ensure equal access to dialysis modalities, including home dialysis.

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New Rare Disease Portal & Resources for Rare Disease Advocacy

AKF recently announced the launch of new content on our website focused on rare kidney diseases and how to advocate on behalf of a rare disease. Here are some ways to get involved:

This content was supported by an educational grant from Alexion.

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