Provider Advocates: Ensuring Medicaid Coverage
In 2016, cystic fibrosis care providers across 22 states advocated for people with CF by sharing their clinical expertise with
Medicaid review committees and boards. CF care providers, patient advocates and the Cystic Fibrosis Foundation regularly engaged with state and national policymakers to determine if Medicaid programs will cover new and existing therapies based on clinical evidence, experience and the treatment's effectiveness.
A Virginia care center provider testified in front of the state Medicaid board about the critical importance of
pancreatic enzymes and access challenges to this necessary treatment. Virginia Medicaid then changed its policy, making pancreatic enzymes available to people with CF.
When Georgia Medicaid was reviewing lumacaftor/ivacaftor (Orkambi®) to determine coverage, CF care providers from two centers in Georgia sent letters to the Medicaid board. Georgia Medicaid now lists lumacaftor/ivacaftor as a preferred medication, giving eligible CF patients an avenue to coverage for this breakthrough therapy. Across the country, there are many similar examples of CF care providers going above and beyond their clinical duties to advocate for their Medicaid patients.
These successes are just two of many examples of our larger effort to ensure that everyone in the CF community can get the care they need.
“I am so excited that I got to be a part of this change. It definitely makes me believe more in the power of advocacy.” - Lucy Song, RDN, CNSC
Key Findings From Provider Surveys
In the 2016
North American Cystic Fibrosis Conference (NACFC) provider survey, 110 care center directors from 39 states weighed in on coverage and access issues and the amount and type of communication they prefer from the CF Foundation.
Center directors overwhelmingly said the most problematic coverage and access issues include:
- Prior authorizations and the administrative burden (i.e., volume, frequency or criteria)
- Vitamins -- both the high costs and lack of coverage
- Mental health care, including access to psychiatrists and coverage for services
- Increasing co-pays and cost sharing for patients
While most center directors are satisfied with the quality and frequency of communication from the CF Foundation, some noted that greater detail and more frequent updates would be helpful when applicable. Thank you to all the care center directors who participated in the survey. We look forward to advocating alongside the provider community on these important issues.
Meanwhile, CF Foundation
Compass conducted a different survey to understand the prior authorization (PA) process for care centers and the utilization of CoverMyMeds, an online tool to streamline PAs. Most of the 916 respondents were care center coordinators, nurses, physical therapists, respiratory therapists, physicians and social workers.
Of the providers involved in the PA process, 58 percent reported spending 20 percent or more of their time on prior authorizations. The most challenging aspects of PAs included time spent calling in PAs, turn-around times from pharmacies or plans, dealing with appeals and frequency of re-authorizations. Providers also indicated the main effects on patient care were delays in treatment and, for some patients, the inability to get treatment at all.
A majority of respondents said that a web-based tool to streamline the PA process would be useful, and 61 percent of respondents indicated that they already use CoverMyMeds.
CF Foundation Compass and Open Enrollment Period
Since the open enrollment period began in November 2016, CF Foundation Compass case managers have helped more than 300 people understand their options and select a plan based on their needs and budget. They also helped people with CF navigate questions on issues such as premium levels and generic medications.
Compass is available to help with insurance, financial, legal and other life issues. To contact them, call 844-COMPASS (844-266-7277) Monday through Friday from 9 a.m. until 7 p.m. ET, or email
compass@cff.org.