The Scleroderma Chronicles: Unforeseen Circumstances and Unintended Consequences

I guess almost everyone in the world knows by now that the United States Supreme Court issued a ruling last month (June 24th) that overturned the constitutional right for a woman in the United States to seek an abortion at any time during the first two trimesters of pregnancy.

This post isn’t really about abortions, okay. This is about the unbelievable unintended consequences of that decision for women who are dealing with unforeseen circumstances. Women who are dealing with medical conditions that they never saw coming, and that they absolutely did not bring upon themselves.

Like autoimmune disease. Like cancer. Like any one of a number of medical conditions that require serious, high-risk medical interventions by the medical professionals who are treating that woman.

My first inkling that there might be a problem with the Supreme Court ruling that was much larger than what was being reported in the press happened the evening of June 29. A woman in one of my autoimmune online support groups posted that she saw a message from a doctor who had a patient reporting that she couldn’t get her methotrexate prescription renewed. I literally couldn’t sleep that night I was so upset. In the days that followed there were more reports, and this is really happening to some women. They are being denied refilling of their methotrexate prescriptions. This drug is a common one used to treat autoimmune diseases like rheumatoid arthritis, lupus, and scleroderma. It is a chemo drug, it can harm an unborn child, and it can also be used to induce an abortion. Here is an article on Health.com, another at msn Everyday Health, and this one from Time.com.

My morning pills.

There are some serious drugs there in my hand. The green pills, Myfortic, can harm an unborn child by causing birth defects or a miscarriage. I take 6 of those every day. The white capsule, omeprazole, should only be used “only if the benefit outweighs the risk to the fetus”. I have to take two of those each day. That little pink pill towards the upper left is the really big problem in my hand. That drug, ambrisentan, required a rigorous enrollment process with paperwork from my cardiologist and myself along with two interviews by pharmacists. I had to prove that I could not get pregnant to avoid taking a pregnancy test prior to each month’s supply of the drug being shipped to me. Even with all of that, I am screened each month before the next month’s supply is overnight express shipped to me. This drug poses a serious risk to a fetus. In my support groups for pulmonary hypertension there are women who are reporting that they are getting dropped from the programs that allow them to get the drug.

I’m okay because I’m beyond childbearing age. Many other women who are dealing with autoimmune diseases that require drugs such as these are of childbearing age. Why? Because the people in the population who are at the greatest risk of developing an autoimmune disease are women of childbearing age, that’s why. Because of the recent decision about access to abortion these women are also now at possible risk of being denied treatment for their autoimmune disease, or in the worse-case scenario, access to an abortion in consultation with their medical professionals.

I literally couldn’t sleep when I read the first reports of the problems with access to methotrexate in my online forums. This is absolutely unbelievable. This is unbearable. How could this be happening to a population of desperate woman, through no fault of their own, who are in this horrible situation? Right now, methotrexate is being targeted, but there are all these other drugs that are used for so many patients with so many conditions. Women, absolutely, are at risk of receiving inferior health care in the US.

This is awful. Have a rose. Right now, I need a rose. And a hug.

This is hitting me hard this evening because I have been dealing with autoimmune pneumonia since last December. My doctors are trying to get it under control with high dose immunosuppressants, but I am coming off one of them right now and I am struggling with shortness of breath and chest pain once again. I’m back on daytime oxygen and I’m feeling a little low. The lung biopsy was the first engagement with my interstitial lung disease, this current drug strategy the second battle, and the third battle is looming on the horizon. This isn’t a disease; it is a war. I never asked for this, and yet, here I am trapped in this unforeseen circumstance, engaged with an uncurable foe. Without the drugs in my hand above, I would already be gone. Yay, science!!

I think that there is another CT scan in my near future, and then there is a possibility that my doctors will move to the Plan B (see what I did there) that they have already discussed with me. Cyclophosphamide (a chemo drug) and OFEV (an anti-fibrotic drug) are on deck if my doctors decide to escalate my care. Both of these drugs can harm an unborn child. I will get access to these drugs. If I was in my 30s, as many other members of my support groups are, it might be a different story. What about women in other support groups that I don’t belong to who just got diagnosed with cancer or an equally serious disease who also need medical treatment with high-risk drugs such as these? Women of childbearing age. Women who may already have children who they need to think of and care for in their health care journey.

Being diagnosed with an autoimmune disease like the ones that I have (systemic sclerosis and Sjogren’s disease) is a punch to the gut. Being denied access to treatment because of your childbearing status is an unbearable second blow. Becoming pregnant while on one of these drugs would place a woman in an impossible situation. Nothing, NOTHING, about this situation is good. Where is the privacy for these women? Where are the HIPPA protections that they are entitled to? The decisions that these women face are absolutely heartbreaking, morally complicated, and ethically challenging. They deserve privacy as they make them along with their health care providers, religious advisors, and families.

This post isn’t about abortion, not really. This post is about unforeseen circumstances and unintended consequences.

I feel a lot better for having gotten this out.

Peace be with you all.

Take this rose with you as you go.

But if you decide to share this post, write a congressperson, join a march, or take some other action to ensure that women have equal access to health care, that would be great.