Merkley Steps Up for PrEP Users

Thursday, Oregon’s U.S. Senator Jeff Merkley and Tina Smith (D-MN) were joined by Senators Chris Van Hollen (D-MD), Elizabeth Warren (D-MA), Bernie Sanders (I-VT), Tammy Baldwin (D-WI), Edward J. Markey (D-MA), and Cory Booker (D-NJ) in a letter to AHIP, the trade association representing health insurance companies. The letter expresses concerns about the continued practice of unlawfully charging individuals for pre-exposure prophylaxis (PrEP) medication and related care. 

The Senators’ letter follows a Wednesday court ruling that further threatens affordable access to PrEP. As the legal process moves forward, the Senators pressed the health insurance industry to abide by current law to provide medication and ancillary services without charge. 

“It has been brought to our attention that enrollees in your members’ health plans continue to be charged for necessary medications and ancillary services—including provider consultations and laboratory services—contrary to law and additional federal guidance issued by the Departments of Labor, Health and Human Services, and Treasury,” wrote the Senators. “We write to express our deep concern with these erroneous and unlawful charges, and to request additional information on steps that AHIP is taking to ensure that its members adhere to federal law and ensure the PrEP drugs and the full scope of PrEP ancillary services are offered without charge to enrollees.” 

A 2019 ruling by the U.S. Preventive Services Task Force (USPSTF) gave PrEP an “A” rating as prevention intervention for people at risk of Human Immunodeficiency Virus (HIV). This ruling brought PrEP under section 2713 of the Public Health Service Act, which requires insurance coverage for services or interventions that have been given an ““A” or “B” rating from the USPSTF. 

Subsequent guidance, published by the Centers for Medicare & Medicaid Services (CMS) in July 2021, further clarified their ruling. Noting that “plans and issuers must cover PrEP consistent with the USPSTF recommendation without cost sharing,” the ruling goes on to clarify that PrEP is not just the medication, but also all of its necessary related services including testing, screening, and provider visits. Despite this ruling and subsequent clarification, individuals are still being wrongly charged out-of-pocket expenses relating to their PrEP care. 

“In light of this clear guidance from CMS, we are alarmed by continual reports that patients are routinely billed, either for payment-in-full or for cost-sharing practices, related to medically-appropriate medications and essential services,” they continued. “These costs can be daunting. HIV advocates and clinical workers across the county have reported that many patients are unaware that they do not have to pay out-of-pocket for PrEP and ancillary services, assuming that many of these costs are simply necessary for being on PrEP medication.” 

The Senators’ letter highlights the inequities in PrEP uptake across communities at higher risk for HIV—including Black and Hispanic communities and transgender women—due to limited access to financial resources needed to cover costs of PrEP and associated medical visits and laboratory tests, among other factors. 

In light of these concerns, the lawmakers ask the following questions and request a response from AHIP within 30 days: 

  1. What information or guidance is AHIP currently providing to support its members in ensuring that their health plans are compliant with federal regulations clarifying that PrEP and ancillary services should be available at no-cost to patients? 
  2. What information and educational materials is AHIP recommending that its members supply to enrollees to ensure that patients know that PrEP, including its ancillary services, should be provided at no-cost to enrollees? 
  3. How is AHIP working with laboratories and health care providers to ensure the accurate coding of appointments and services so that enrollees are not erroneously billed for these services? 
  4. How is AHIP working with its partners to develop a full understanding of the scope of the issue, both in terms of the number of individuals impacted and the monetary impacts of erroneous bills? 
  5. How is AHIP working with its members to resolve issues for beneficiaries who have been wrongfully charged for PrEP and associated services in an expeditious manner? 

The letter is supported by PrEP4ALL, the HIV+Hepatitis Policy Institute, the Center for Health and Democracy, and NMAC. 

“Unfortunately we have documented dozens of cases of insurers still charging patients out-of-pocket fees for PrEP-related care, a year after CMS and the Department of Labor issued their guidance,” said Kenyon Farrow, Managing Director of Advocacy & Organizing with PrEP4ALL. “Ending the HIV epidemic will require us to ensure everyone with insurance be able to get PrEP services with no cost-sharing, as the rule intended. We applaud Sen. Merkley and Sen. Smith’s tireless advocacy on behalf of patients.” 

“We appreciate Senators Merkley and Smith’s leadership and all their colleagues desire to ensure that the preventative service provisions of the Affordable Care Act are properly implemented. Private insurers must provide PrEP drugs and associated services without patient cost-sharing. We are receiving too many complaints from PrEP users that this is not always happening. We trust with this letter insurers will ensure full compliance,” said Carl Schmid, Executive Director of the HIV+Hepatitis Policy Institute. 

“While appalling, it’s sadly not shocking to see Big Health Insurance wrongfully billing enrollees for medications and ancillary services as part of a PrEP regimen to prevent HIV, despite crystal clear guidance from the Departments of Health and Human Services, Labor, and Treasury not to do so,” said Wendell Potter, President of the Center for Health and Democracy. “We’re grateful for the leadership of Senators Merkley and Smith for sending this letter, underscoring their understanding of the effectiveness of PrEP and their compassion for those at risk and their families.” 

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