Summary
Last updated at 8:30am on October 7, 2022 with additional news coverage. I will do my best to continue updating this post as I learn more. – Cheryl Crow, Rheumatoid Arthritis patient, Occupational Therapist & Founder of Arthritis Life
The US Supreme Court’s Dobbs v. Jackson decision overruling Roe v. Wade on Friday, June 24th has interfered with some patients’ access to methotrexate, a very common medication used for rheumatoid arthritis. It is also used for lupus, inflammatory myositis, psoriasis, vasculitis and sometimes juvenile idiopathic arthritis (citation).
It’s a very complex issue, but I have been hard at work gathering the latest information and resource articles for you to learn more about the issue.
What You Can Do If You’ve Had Difficulty Accessing Methotrexate:
- Share your story with American College of Rheumatology: Email advocacy@rheumatology.org
- Share your story with CreakyJoints: email zrothblatt@ghlf.org, Zoe Rothblatt, Associate Director of Community Outreach.
- Share with the Arthritis Foundation: email advocacy@arthritis.org, reach out to the Arthritis Foundation Help Line (call 800-283-7800) with questions, or Tweet at @AFAdvocacy with stories and questions.
- Share with the Lupus Foundation of America: They have instructed lupus patients to email access@lupus.org
- Share with the Crohn’s and Colitis Foundation: they made a statement encouraging people to share stories with advocacy@crohnsandcolitisfoundation.org
- Share with media outlets: I will be updating my Twitter account and Instagram stories (plus methotrexate “highlight” under my profile) to share the latest opportunities to speak with reporters and press about this issue.
- Share with me: I’m happy to continue collecting anecdotes on this page as well, you can contact me via Instagram direct message, Twitter direct message, or the “Contact” section of this site.
Press Coverage of this Issue (Most Recent at Top)
- Mom speaks out after 14-year-old daughter was denied arthritis medication due to abortion law – October 6th, 2022 – Good Morning America
- Denial of methotrexate prescriptions post-Roe yields ‘condemnation,‘ Healio.com, July 29th
- Women with chronic conditions struggle to find medications after abortion laws limit access, CNN.com, July 22nd – example from woman with Crohn’s Disease in Maryland who was forced to switch off methotrexate by her physician, and a woman with rheumatoid arthritis in Missouri who was denied methotrexate from a pharmacist.
- Arthritis Patients Are Being Denied Methotrexate Post-Dobbs. Are People With Cancer Next?, Forbes.com, July 18th, 2022
- Patients being barred from medication no longer used for abortion post Roe, ABC News, July 14th, 2022
- Pharmacies may violate civil rights if they refuse meds linked to abortion, feds warn, NPR.org, July 13th, 2022
- “Doctors Fearing Legal Blowback Are Denying Life-Saving Abortions,” Bloomberg Press, July 12th, 2022
- “Post-Roe, many autoimmune patients lose access to ‘gold standard’ drug,” Los Angeles Times, July 11th, 2022
- “Don’t Take Away My Methotrexate! How Roe v. Wade Has Changed Vital Medication Access,” written by me and published on July 8th, 2022
- “The US Abortion Ruling Is Already Blocking Life Saving Drugs,” Novara Media, July 8th 2022 (I am quoted in this article)
- “Abortion Ruling and Methotrexate: What It Means for Your Chronic Condition,” HealthCentral.com, July 7th 2022
- “S4, Ep 5-Methotrexate: Confusion and Controversy,” The Health Advocates Podcast (I am interviewed as part of this episode)
- Abortion Restrictions May Be Making It Harder for Patients to Get a Cancer and Arthritis Drug, Time.com, July 6th, 2022
- “A Doctor Just Declined To Prescribe This Patient Their Arthritis Treatment Because It Could Hurt A Fetus That Doesn’t Even Exist” – Buzzfeed.com, July 5th
- “Anger as Woman Denied ‘Abortifacient’ Medication After Roe v. Wade Ruling” – Newsweek.com, July 4th
- “The demise of Roe v Wade: ramifications for rheumatology,” The Lancet Rheumatology, July 4th
- Women With RA May Have Trouble Accessing Methotrexate Because of Abortion Restrictions, from EverydayHealth.Com on June 30th (I am quoted in this article).
- Advocacy Alert: Abortion Bans Threaten Patient Access to Their Medications, from the nonprofit CreakyJoints on Thursday, June 30th, 2022
- American College of Rheumatology statement about the issue on June 30th, including instructions for whom to contact if you have issues
- New Barrier to Methotrexate for Arthritis Patients, from the Arthritis Foundation website, June 30th, 2022
- “Clearly already scared’: Rheumatology providers, patients brace for Roe v. Wade reversal,” Rob Volansky – June 21st, 2022
- Abortion Bans Are Already Messing Up Access to Other Vital Meds, Slate.com, May 24, 2022
Why is Methotrexate Important for Rheumatoid Arthritis and Similar Conditions?
According to the American College of Rheumatology Patient Fact Sheet, methotrexate is: “One of the most effective and commonly used medications in the treatment of rheumatoid arthritis and other forms of inflammatory arthritis, and also may be used to treat lupus, inflammatory myositis, vasculitis, and some forms of childhood arthritis.”
“It is known as a disease-modifying anti-rheumatic drug (DMARD), because it not only decreases the pain and swelling of arthritis, but it also can decrease damage to joints and long-term disability.”
Since I’ve taken methotrexate for so long, people often ask me what my experiences have been like and if I’ve had any side effects. I detailed my experiences in this panel discussion back in 2020, along with seven other inflammatory arthritis patients.
Methotrexate Improves the Lifespan of People with Rheumatoid Arthritis
People with rheumatoid arthritis historically have had a 10 year reduction in lifespan (citation), but methotrexate mitigates that risk (citation – Choi et al, 2002 “Methotrexate and mortality in patients with rheumatoid arthritis: a prospective study).
In other words, since methotrexate improves how long people can live with this condition, so access to methotrexate is a “right to life” issue in my humble opinion.
What else is Methotrexate Used For?
At higher doses than used for Rheumatic Disease, methotrexate is also used for chemotherapy. “It may also be used to terminate ectopic pregnancies to save the life of the parent.” – Rob Volansky, Healio.com, in the helpful article: “‘Clearly already scared’: Rheumatology providers, patients brace for Roe v. Wade reversal.”
Some Patients are Having Issues Accessing Methotrexate:
Pharmacists in some states have been refusing to fill the methotrexate prescription for patients with rheumatoid arthritis and ankylosing spondylitis in light of the recent Roe v Wade overturn. The background to this issue in Texas specifically is documented in this Slate.Com article: “Abortion Bans Are Already Messing Up Access to Other Vital Meds,” by Christina Cauterucci.
Additionally, some doctors or medical practices have issued statements to their entire patient caseload that they are no longer prescribing for anyone regardless of gender or fertility status (as further clarified on a thread from Twitter user @BeccaLizz, from northern Virginia who said “This is being done for ALL patients within the rheumatology practice. male and female. regardless of gender, age, or status of pregnancy”).
In other medical practices, patients are being told that “we have been instructed to discontinue MTX in female patients of child-bearing age,” according to Twitter user @trashville in this tweet.
Specific Examples of Patients Who’ve Been Denied Methotrexate
This list was last updated on August 4th, 2022 and includes examples from social media as well as news articles. These are in chronological order starting with the least recent and ending with the most recent examples.
Please note I have removed one of the images I posted initially as I did not get express permission to share the screen shot, and I apologize for that.
Picture below: Twitter post from user @acrowandthedead on June 27th, 2022 who got care in South Carolina:
Picture below: Twitter thread from Twitter user @BeccaLizz on June 30th, 2022, who clarifies later that she lives in northern Virginia:
Post Below: from Twitter User @_trashville in Tennessee:
Post below: from Twitter User @Vinminen on June 24th, 2022 (date wrong in the header of my image below)
Post below: Instagram Comment on my Post, from Instagram User @paroaria14 who later commented to clarify she’s in Pennsylvania
You can also learn more about this issue by reading “‘Clearly already scared’: Rheumatology providers, patients brace for Roe v. Wade reversal,” Healio.com, Rob Volansky
American College of Rheumatology Statement
The ACR issued a statement on June 30th saying: “The ACR is aware of the emerging concerns surrounding access to needed treatments such as methotrexate after the recent decision in Dobbs v. Jackson Women’s Health Organization. We are following this issue closely to determine if rheumatology providers and patients are experiencing any widespread difficulty accessing methotrexate, or if any initial disruptions are potentially temporary and due to the independent actions of pharmacists trying to figure out what is and isn’t allowed where they practice.
The ACR has assembled a task force of medical and policy experts to determine the best course of action for ensuring our patients keep access to treatments they need. In the meantime, we are asking members and patients who have experienced challenges accessing methotrexate to email advocacy@rheumatology.org with details.”
How to Advocate If You are Not Directly Affected by This Issue
You can join the American College of Rheumatology’s “Advocates for Arthritis” in person advocacy event in September, 2022 as a patient advocate or health provider representative. Applications are open now – I went as a patient advocate in 2019 and it was a wonderful experience to meet with my state representatives and advocate for better laws around patient access to biologic medications.
You can join the Arthritis Foundation’s “Ambassador Program“, which is a group of “Volunteers committed to taking part in the democratic process, serving as liaisons between the Arthritis Foundation and their Congressional Districts Representative. Ambassador efforts are crucial to the success of the Arthritis Foundation. Ambassadors dedicate an average of two hours a month to sharing their story with decisionmakers to raise awareness for Americas leading cause of disability, arthritis.” (citation: Arthritis Foundation website).
Join the Global Healthy Living Foundation’s “50-State Network:” “Through our 50-State Network, we train and help patients living with chronic illnesses to amplify their voice and add their personal perspective to health policy discussions happening in Washington, D.C., state capitals, hearing rooms, regulatory meetings, and other public forums. Whether by adding your name to a petition, speaking in front of lawmakers, or contributing an opinion article to your local newspaper, we invite you to join our volunteer network to influence the future of health care in the United States.”
Keep an eye out for additional advocacy opportunities. I will update if/when I know more and you can find additional examples on the “Methotrexate” highlight on my Instagram page and my Instagram Stories.
– Cheryl Crow, Occupational Therapist, Rheumatoid Arthritis Patient and Arthritis Life founder
[…] Some Rheumatic Disease Patients are Having Difficulty Accessing Methotrexate […]
The post have been reports of patients and providers having difficulty accessing methotrexate. Unfortunately, arthritis patients who rely on methotrexate are reporting difficulty accessing it.
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In some states, patients who take medicine used to treat autoimmune diseases are finding the drug hard to access . Some patients are having difficulty accessing methotrexate for rheumatoid arthritis in light of Roe v Wade being overturned.