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 pharmacy 3

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