With the recent SCOTUS decision to overturn Roe v. Wade, several questions and concerns have been raised in the chronic illness community. Many patients are wondering, how will this historic decision affect lupus patients and what will this mean for people living with lupus and other lupus-like illnesses?
Unfortunately, there really isn’t a clear answer. In this blog, we will do our best to examine and discuss objective insights from professionals on this matter. At More Than Lupus, we know this is a very sensitive topic and emotions are high right now. However, we feel this information is important to address and we appreciate your willingness to read about our concerns.
A Message from the American College of Rheumatology:
Abortion is now illegal or heavily restricted in at least 11 states (and twelve other states have laws in place that pave the way to quickly ban or severely restrict access to them as well). Now that the Supreme Court has overturned Roe v. Wade, experts are concerned because many physicians will be caught in a bind. Some feel they will be unable to fulfill their professional obligations to provide care to their pregnant patients with lupus and other rheumatological conditions because of state laws that will forbid access to certain medications that may be harmful to an expectant woman.
Here is a recent message from the American College of Rheumatology on this matter:
“The ACR opposes any action which interferes with the practice of evidence-based medicine or intrudes upon the doctor-patient relationship. Pregnancy often complicates the management of women with rheumatic diseases and may threaten the life of the mother. Rheumatologists and other rheumatology professionals must be able to provide the best evidence-based care and guidance for all of their patients.”
A Message from Dr. Don Thomas:
After the Supreme Court decision, I reached out to renowned rheumatologist, and author of “The Lupus Encyclopedia” Dr. Don Thomas. I asked him this question, “During pregnancy, chronically ill people are at an increased risk for complications such as high blood pressure, preeclampsia, placental issues, growth issues for the baby and preterm delivery, as well as ectopic pregnancy and pregnancy-related death. Can you expand upon some of these complications?”
“When I started my career as a rheumatologist, most women with systemic lupus erythematosus (SLE) were discouraged from getting pregnant due to all these issues. Today, the vast majority of SLE patients can safely become pregnant with a high success rate of having a healthy baby.
However, it is important to plan ahead of time along with your doctor (hopefully a rheumatologist). If a woman plans appropriately and doesn't try to conceive unless she has been under good control of her lupus for at least 6 months, the chances of having a successful pregnancy approaches that of an average pregnant woman.
However, I must voice my concern and fears regarding the overturning of Roe v. Wade by the U. S. Supreme Court in June 2022. This leaves the decision for abortion policies completely up to the states.
Some of these policies are clearly unsafe for some pregnant lupus patients. There are circumstances where the continuation of pregnancy would be detrimental, and even potentially deadly, for someone with SLE. Just one example is eclampsia where the only cure is pregnancy termination (either via abortion or induced delivery/C-section).
Some of the policies we are seeing are so restrictive that it criminalizes the act of pregnancy termination even if it is medically dangerous for the mother. This places doctors in these states in a precarious situation. On the one hand, we are obligated to provide the best health care to our patient (the pregnant woman). However, on the other hand, we are threatened by poorly thought-out and dangerous laws that can prohibit the doctor from acting on the woman's behalf (i.e. termination of the pregnancy).
I suspect that the vast majority of doctors will abide by our Hippocratic Oath and help our patient even if it potentially means disobeying the law. I foresee a big fight now, and in the near future, regarding this matter.”
Increase your chances of having a successful pregnancy, by doing the following suggestions from THE LUPUS ENCYCLOPEDIA:
Stick to the basics, abide by everything in "The Lupus Secrets"
Do not try to become pregnant unless your lupus has been under good control for at least 6 months
Take hydroxychloroquine (HCQ) and low dose aspirin throughout pregnancy (check with your doctor first, but both of these greatly improve pregnancy success in SLE)
If you are on any pregnancy dangerous drugs (such as mycophenolate and methotrexate) ask to be switched to azathioprine (and HCQ + aspirin) at least 3 months prior to conception to ensure it will be sufficient in keeping the lupus under control. Azathioprine is a pregnancy-safe drug.
Have your anti-SSA and antiphospholipid antibodies checked
If anti-SSA positive, ask your high-risk obstetrician to do fetal heart monitoring weekly beginning at week 16
If positive for antiphospholipid antibodies, ask if you need a blood thinner stronger than aspirin or not
See your rheumatologist and a high-risk obstetrician regularly
Keep your blood pressure perfectly controlled (work with your primary care doctor)
Protect your baby with vaccines beforehand (COVID, pneumococcal, flu shots)
Get rid of those cigarettes and avoid secondhand smoke; do not drink any alcohol
Take folic acid daily to prevent spina bifida
For more information on a healthy pregnancy, read Dr. T's latest blog here.
A Message from a Pharmacist:
Many lupus and rheumatoid arthritis patients are concerned about the recent abortion band because of the possibility of certain medications being withheld. I asked Doctor of Pharmacy and Lupus Patient, Dr. Van Anh Vu this question, “There are two lupus medications specifically that would be toxic or potentially lethal to a developing baby, Methotrexate and Mycophenolate. Both these medications are used to keep lupus under control and one specifically for kidney nephritis. Both can cause birth defects and miscarriages. It is recommended that women are off the medication for 6 months before family planning. If there is an unplanned pregnancy (that includes rape and incest in many states) and if abortion is not an option in their state, then they must carry their pregnancy to term and delay treatment. We are hearing about patients not being able to refill these medications (specifically methotrexate) because it can be used for pregnancy termination. As a Doctor of Pharmacy, can you explain how these medications work and what are the potential health outcomes for a patient with moderate/severe lupus who cannot access them?
“Methotrexate is classified as a disease modifying antirheumatic agent as well as a chemotherapy agent that works to inhibit DNA synthesis, repair, and cell replication. It is currently FDA-approved for the treatment of psoriasis, rheumatoid arthritis, and various types of cancers, including breast cancer and leukemias. In systemic lupus erythematosus (SLE), methotrexate is used off-label in an attempt to reduce lupus disease activity. Its place in therapy for SLE is often adjunctive to first-line treatments and can help lower corticosteroid use. How it affects the immune system is not well established, but methotrexate does provide an immunosuppressive effect. Mycophenolate mofetil (MMF), similarly, is an immunosuppressant that inhibits T and B cell proliferation of the immune system thereby pumping its breaks. MMF is FDA-approved for use in solid organ transplant to prevent organ rejection. Its role in SLE is often first-line treatment for lupus nephritis, in which its drug mechanism helps to block the immune system’s attack on the kidneys. Both agents are extremely teratogenic, meaning they can cause birth defects and miscarriages.
However, lack of access to these medications or gap in therapy can have detrimental effects for SLE patients, including death.
Patients of SLE, a chronic autoimmune disease, rely on immunosuppressive therapy to protect their organs from being damaged by their own immune system. Without these medications, patients may experience lupus flares, which in turn, can lead to hospitalizations for the treatment of acute organ failure. If left untreated, this can result in death.
With the recent overturn of Roe v. Wade and its unforeseen consequences on medication access, many patients, including SLE and cancer patients, are left struggling to obtain their medications. As a pharmacist, I believe it is pivotal to not impede appropriate therapy and quality patient care irrespective of one’s stand on abortion.
It is our duty as healthcare providers to ensure patients have access to medications when prescribed. Interfering with the prescribing of methotrexate and MMF can mean life or death for many patients. For these reasons, I stand against any policies that will serve as barriers to medication access. Personally, it has become a challenging time to practice when appropriate medical treatment, such as abortion, can be banned according to state law. As a female lupus patient on MMF, I cannot imagine having to carry an unplanned pregnancy to term while on therapy. This would not only jeopardize my pregnancy but also my life living with lupus, and that is not the health care I would want to receive or provide. I therefore strongly encourage the decision of abortion to be left to the patient and healthcare provider.
As the Creator of a nonprofit that primarily serves women of color with a potentially life-threatening chronic illness, this ban is particularly alarming.
A 2017 study by the University of Michigan found that complications from chronic illness are the most common cause of pregnancy-related deaths in the U.S., accounting for half of such deaths. Black moms are already twice as likely to die during or after childbirth than any other race.
These disparities already exist for this community, making the addition of the overturn of Roe v. Wade a real threat. Laurie Bertram Roberts, executive director of the Alabama-based Yellowhammer Fund, which provides financial support for women's healthcare, said women of color in states with restrictive abortion laws often have limited access to health care and a lack of choices for effective birth control. Schools often have ineffective or inadequate sex education as well. “If abortions are outlawed, those same women — often poor — will likely have the hardest time traveling to distant parts of the country to terminate pregnancies or raising children they might struggle to afford,” said Roberts. “We’re talking about folks who are already marginalized.”
Seeing underserved and marginalized communities suffer even more due to this decision impeding upon our health care system (which goes even beyond abortion access, by the way) is heartbreaking.
Additionally, here are just some of the people in the chronic illness community the justices of the Supreme Court of the United States failed to consider when they overturned Roe v. Wade:
People with autoimmune disorder complications
Transplant recipients whose medications make pregnancy problematic
Those who live with genetic disorders that could prove fatal for the baby
Cancer patients undergoing chemotherapy that would affect the fetus
Patients with mental health conditions that require daily medications
Those whose epilepsy at higher risk for a stillbirth
From lupus and rheumatoid arthritis patients not being able to access medication, to at-risk communities being even MORE in jeopardy after this decision, the trickle-down effect of this ruling could be detrimental to women (particularly BIPOC) with lupus. We hope that policy makers and state officials can work together to provide accessible health care for all without creating legal ramifications for doctors and potentially deadly ramifications for patients.
If you're having trouble accessing your methotrexate to treat your lupus or arthritis, please contact this toll-free Helpline at 800-283-7800
To read the full statement from the Arthritis Foundation on this issue, click here.
Kelli (Casas) Roseta
*All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. MTL encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site are owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2022.