Lupus Foundation of America urges Congress to Maintain Supply of Hydroxychloroquine for People with Lupus

The Lupus Foundation of America partnered with national patient organizations to submit a letter to the Congressional Leadership and the Administration calling for the implementation of needed patient protections that include ensuring people with lupus continue to have access to hyrdroxychloroquine (HCQ). The Foundation was responsible for adding language about the needs of the lupus community to this letter. We continue to work in partnership with other patient and provider organizations to explore additional ways in which the patient community can work with government and other stakeholders to preserve access to needed care and treatments.

Download the letter (PDF) or read the contents below.

The Honorable Nancy Pelosi, Speaker
United States House of Representatives
1236 Longworth House Office Building
Washington, D.C. 20515

The Honorable Mitch McConnell, Leader
United States Senate
317 Russell Senate Office Building
Washington, D.C. 20510

The Honorable Kevin McCarthy, Leader
United States House of Representatives
2468 Rayburn House Office Building
Washington, D.C. 20515

The Honorable Charles Schumer, Leader
United States Senate
322 Hart Senate Office Building
Washington, D.C. 20510

Re: Medications Access Must be Included in Third COVID-19 package

Dear Speaker Pelosi and Leaders McConnell, McCarthy, and Schumer:

We, the 96 undersigned organizations, appreciate the work Congress has done so far to respond to the COVID-19 pandemic. We write to strongly encourage you to include provisions regarding access to medications and supplies for people of all ages in the next legislative package.

People with chronic conditions need access to essential and lifesaving medications and supplies on a regular basis. The Centers for Disease Control and Prevention (CDC) has encouraged people who take medications to stock up on extra supplies of their medications to comply with social distancing guidelines and prepare for emergencies. However, many forms of insurance place limits on refills. Further, there are even stricter limits on medications that are controlled substances, indicated for and used to treat epilepsy, mental illnesses, cancer and other serious medical conditions.

We urge Congress to take action to assist people with chronic health conditions to protect themselves in this crisis and maintain access to their medications. Removing burdensome barriers to obtaining medications, including limits on refills or other efforts to ensure supply of these medications, will keep the people we represent out of hospitals and doctors’ offices, freeing up space for those with COVID-19. It is a particular concern to maintain a consistent supply for people who take an approved medication that is being studied for use in COVID-19, such as hydroxychloroquine, which is used to treat lupus and rheumatoid arthritis,

So far, CMS has encouraged flexibility in Medicare¹ and states have flexibilities through 1135 waivers to relax refill limits.² However, implementation is uneven, and plans and states cannot relax controlled substance guidelines on their own. Congress must take immediate, national action to ensure access to medications.

• We urge Congress and the Administration to take action to address the following issues:
• Require all payers to allow for provision of an emergency supply of medications and supplies by relaxing restrictions on timing of refills and amounts, to at least the CDC-recommended extra 30-day supply and up to a 90-day supply to reduce returns to the pharmacy³
• Ensure that these protections extend to medications that are controlled substances indicated for and used to treat epilepsy, mental illnesses, cancer and other serious medical conditions, as well as injectables
• Require all payers to waive prior authorization and utilization management requirements
• Require flexibility regarding use of mail order pharmacies, including out of state mail order pharmacies and other home delivery methods
• Require payers to relax requirements for in-person visits for refills, including allowing visits through telehealth
• Require all payers to establish policies to assist patients with cost-sharing related to their emergency supply or allow for delayed payment of out-of-pocket costs for emergency supplies
• Increase FDA monitoring and reporting of shortages to ensure consistent supply, especially existing medications approved to treat chronic conditions that may be under study or used to treat COVID-19

We appreciate your actions to date and your attention during this time. If you have any questions, contact Rachel Patterson at rpatterson@efa.org.

CC:
Senate Finance Committee Chairman Charles E. Grassley
Senate Finance Committee Ranking Member Ron Wyden
Senate HELP Committee Chairman Lamar Alexander
Senate HELP Committee Ranking Member Patty Murray
House Majority Leader Steny H. Hoyer
House Energy and Commerce Committee Chairman Frank Pallone, Jr.
House Energy and Commerce Committee Ranking Member Greg Walden
House Ways and Means Committee Chairman Richard E. Neal
House Ways and Means Committee Ranking Member Kevin Brady
House Education & Labor Chairman Bobby Scott
House Education & Labor Ranking Member Virginia Foxx
Vice President Mike Pence
Secretary of Health and Human Services Alex Azar
Deborah Birx, White House Coronavirus Response Coordinator
Centers for Medicare and Medicaid Services Administrator Seema Verma
Surgeon General Jerome Adams
National Institute of Allergy and Infectious Diseases Director Anthony Fauci
Centers for Disease Control and Prevention Director Robert Redfield
Sincerely,
ACCSES - The Voice of Disability Service Providers
ADAP Advocacy Association
AIDS Action Baltimore
AIDS Alliance for Women, Infants, Children, Youth & Families
AIDS Foundation of Chicago
Allergy & Asthma Network
Allies for Independence
ALLvanza
ALS Association
American Academy of Physical Medicine & Rehabilitation (AAPM&R)
American Association of People with Disabilities
American Association on Health and Disability
American Behcet's Disease Association
American Cancer Society Cancer Action Network
American Council of the Blind
American Diabetes Association
American Kidney Fund
Arthritis Foundation
Association of Nurses in AIDS Care
Association of University Centers on Disabilities
Asthma and Allergy Foundation of America
Autism Society of America
Autistic Self Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
CA Chronic Care Coalition
Cancer Support Community
Center for Health Law and Policy Innovation
Center for Medicare Advocacy
Center for Public Representation
Children and Adults with Attention-Deficit/Hyperactivity Disorder
Christopher & Dana Reeve Foundation
Chronic Disease Coalition
CommunicationFIRST
Community Access National Network (CANN)
Community Catalyst
COPD Foundation
Crohn's & Colitis Foundation
Cure SMA
Cystic Fibrosis Foundation
Disability Rights Education & Defense Fund
Easterseals
Epilepsy Alliance North Carolina
Epilepsy Foundation
Epilepsy Foundation of Colorado
Epilepsy Information Service of Wake Forest School of Medicine
Equality California
Family Voices
Georgia AIDS Coalition
GLMA: Health Professionals Advancing LGBTQ Equality
Global Colon cancer association
GO2 Foundation for Lung Cancer
HealthHIV
Hep B United
Hepatitis B Foundation
HIV Dental Alliance
HIV Medicine Association
Human Rights Campaign
International Myeloma Foundation
International Pemphigus Pemphigoid Foundation
Johns Hopkins University School of Medicine
Justice in Aging
Lakeshore Foundation
Lupus Foundation of America
MANA, A National Latina Organization
Mended Hearts & Mended Little Hearts
Men's Health Network
MLD Foundation
Muscular Dystrophy Association
NASTAD
National Alliance on Mental Illness
National Association of Councils on Developmental Disabilities
National Association of State Head Injury Administrators
National Black Nurses Association
National Center for Parent Leadership, Advocacy, and Community Empowerment (National PLACE)
National Council on Independent Living
National Disability Rights Network
National Down Syndrome Congress
National Health Law Program
National Hispanic Council on Aging
National Hispanic Medical Association
National Kidney Foundation
National Multiple Sclerosis Society
National Organization for Rare Disorders
National Patient Advocate Foundation
Noah's Hope - Hope4Bridget
Partnership for Innovation and Empowerment
Prevent Blindness
Silver State Equality-Nevada
Susan G. Komen
TASH
The AIDS Institute
The Arc of the United States
United Spinal Association
WomenHeart: The National Coalition for Women with Heart Disease

¹ https://www.cms.gov/files/document/hpms-memo-covid-information-plans.pdf
² https://www.medicaid.gov/state-resource-center/disaster-response-toolkit/federal-disaster-resources/index.html
³ https://www.cdc.gov/cpr/prepareyourhealth/00_docs/18_295610-A_PIB_Prescriptions.pdf