MRF Joins Partner Organizations in Response to COVID-19

April 15, 2020 – During this time of uncertainty due to the COVID-19 pandemic, the Melanoma Research Foundation (MRF) is working harder than ever to help support and advocate for the melanoma community. Over the past few weeks, the MRF has collaborated with like-minded organizations dedicated to public health and has signed onto seven letters urging support relating to both COVID-19 and access to healthcare.

Everylife Foundation: Community COVID Access Letter

On March 25, 2020, nearly 200 patient advocacy groups, including the MRF, sent a letter to lawmakers in all 50 states highlighting unique access barriers created by COVID-19 and temporary policy adjustments that could address these barriers. The CDC is currently advising people at high risk of complications – a group including people with rare diseases like mucosal, pediatric and ocular melanoma – to take significant precautions during the coming weeks, including obtaining supplies of prescription medications and staying at home for prolonged periods of time. Without temporary adjustments to policy, this is not feasible for most Americans living with rare diseases. The attached letter was sent to Governors, Medicaid Directors, Insurance Commissioners and Executive Directors of Boards of Pharmacy to commend their ongoing efforts to protect the public’s health – and urge that they protect rare disease patients and high-risk populations during the COVID-19 crisis by:

1. Issuing an emergency regulation requiring that insurers operating within the state allow a one-time 90-day refill of covered prescription medications and lift barriers to obtaining medication from out-of-network pharmacies.
2. Preparing for the possibility of supply chain disruptions by requiring insurers to cover off-formulary prescription drugs if there is not a formulary drug available to treat the insured.
3. Ensuring prior authorization and re-authorization requirements do not impede access to care and treatment.
4. Facilitating authorization of home infusion and injection services and ensuring reimbursement rates appropriately reimburse for such services;
5. Requesting authority to extend appeal and fair hearing deadlines to ensure important protections for patients who are seeking access to care and treatment; and
6. Seeking flexibilities afforded under section 1135(b)(1)(C) of the Social Security Act.

Young Invincibles: Urge Health and Human Services (HHS) to Create Emergency COVID-19 Special Enrollment Period (SEP)

On March 20, 2020 the MRF joined over 200 organizations asking that the emergency 60-day Special Enrollment period be expanded in both healthcare.gov and state-based exchanges, maximizing enrollment of the uninsured into coverage. Limiting the SEP to defined groups who must verify eligibility would not only delay care receipt, it would deter enrollment by healthy consumers, endangering the individual-market risk pool. Additionally, this letter asks the Department to take steps to ensure coverage can begin as soon as possible. And in order to get the word out to consumers, the letter asked for investment to educate the public about this SEP through digital and television ads, including materials in multiple languages. HHS should also focus significant outreach and advertising efforts to employers and employees most at-risk of losing employer-based coverage. This an important first step in enrolling the uninsured to limit the scope of the current public health crisis.

The Defense Health Research Consortium: Increased Funding for the Defense Health Research Programs and Congressionally Directed Medical Research Programs, at the Department of Defense

Along with 133 healthcare organizations, the MRF encouraged the House Appropriations Committee to continue their support for the critical and highly successful defense health research programs funded through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD) during the COVID-19 health crisis.

Haystack Project/Rare Cancer Policy Coalition: Urging Changes to Contract Year 2021 and 2022 Policy and Medicare

The MRF joined over 20 organizations urging the Administration to devise any necessary protections to ensure that efforts toward reducing the costs patients with commonly-encountered conditions pay for Medicare Advantage (MA) plans and Prescription Drug Plans (PDP) does not impede or complicate treatment access for individuals with rare conditions.

National Council of Nonprofits: Support the Lankford Amendment

1. Provide an above-the-line deduction for charitable giving capped at 1/3 of the standard deduction ($4,000 for individuals/$8,000 married)
2. Ensure availability for all of 2020 so those who have already donated this year can take advantage
3. Ensure there is no giving floor included in order to make assessable to small donors

National Health Council: Charitable Organization COVID-19 Relief

Along with 216 national health organizations, the MRF urged House and Senate leaders to include nonprofit patient advocacy organizations within any federal aid packages or supplemental appropriations measures

Haystack Project: Accelerating Kid’s Access to Care ACT, HR 5900

The MRF joined a coalition of national rare disease organizations to support policy refinements that ease the burden of accessing the care they need, and would ask that the Accelerating Kids’ Access to Care Act address the need to alleviate access issues for adults as well as children with rare disorders, including rare cancers like pediatric melanoma, requiring treatment from out-of-state specialists through Medicaid.

As an organization, our commitment to work and advocate for melanoma patients, survivors and caregivers continues because we can’t stop, and we won’t stop working for your health. Check out the MRF’s Advocacy Action Center to keep up with the latest policies and legislation affecting people with melanoma. If you have any questions or want to learn more about these bills and others in the future please email [email protected].