Frightening Medical Paradox Looms for Women with Chronic Illness

If you couldn’t take birth control, would you rather…

Ignore doctor’s advice and take prescribed medicines for a condition that could cause fetal abnormalities OR
Ignore doctor’s advice and forgo essential medicines just in case you got pregnant?

Women with MS or other chronic conditions – and those who love us – must pay attention to upcoming legislation regarding birth control coverage. If current legislation and funding considerations pass, then the question will not be hypothetical for many women.

Like our invisible diseases, the impacts on us are not getting the visibility they need. For those of us not directly impacted by birth control access, we still need to be concerned about the slippery slope that these decisions could create for anyone with a chronic illness.

Political advocates tend to discuss legislation/issues in terms of black and white. Some of us are caught in the shades of grey that are pushed to the side and often ignored, even though they have a significant impact on our lives. The advocates focus on their moral dilemma without concern others might be facing dilemmas as a result.

Birth Control Coverage and Funding Issues

Congress is considering a bill that would allow employers to opt out of insuring birth control coverage for their employees. If they are morally opposed to contraception, they don’t want to be forced to pay for it. So any women who work for these employers will have to pay for contraception out of their own pockets.

And as part of the budget process, the White House Domestic Policy Council created a memo recommending funding changes. Social conservatives request shifting Title X funding from family planning and prevention services to fertility awareness (aka rhythm method) birth control.

Let’s compare the methods:

Method	Cost	How Long Does It Last?	1 Year Failure Rate	Abandonment Rate After Less Than 1 Year
IUC (intra-uterine)	$1K	Up to 5 years (can be removed earlier)	1%	20%
Implants	$850	Up to 4 years (can be removed earlier)	0.05%	16%
Male condoms	$0.50	One-Time	18%	57%
Fertility awareness	$0	n/a	24%	53%
No method	$0	n/a	85%	n/a

Failure and abandonment rates: Association of Reproductive Health Professionals study

Sure, all of these methods are less expensive than the cost of delivering and supporting a child. But without insurance, many women can’t afford the cost of the most effective methods.

Health care costs are high enough for those of us with chronic illnesses that many can’t afford to pay out of pocket for contraception.Click To Tweet

And I have a question for those of you saying a woman should just keep her knees together. If you’re married, would you be willing to stop having sex for decades until menopause? Didn’t think so.

And How Does This Relate To Chronic Illness?

Show of hands – how many of you are taking medicine for your illness(es) and associated symptoms?

Medicine and pregnancy often don’t mix well. For some medicines, studies have shown no risk for fetal abnormalities. Unfortunately, many have risks, while some have proven correlations between the medicine and fetal abnormalities. Most MS drugs, including symptom management, are in the riskier categories.

Do your homework. Don’t try to guess the risk associated with each medicine because you can easily be wrong. For example:

Which drug is in the riskiest category:

Cocaine
Cholesterol medicine
Xanax

The answer is cholesterol medicines, in the highest risk category – the evidence of fetal abnormalities outweigh the benefits of taking them. Xanax is in the next risk category, because the benefits of taking it may outweigh the proven risk of fetal abnormalities. Cocaine is in the lowest risk category of the three. Animal studies suggest increased risk, but there haven’t been any human tests to confirm the risk.

Those of us taking disease-modifying therapies for MS have been told by our neurologists not to get pregnant while taking the medicine. Throw in the anti-depressants, anti-anxiety, spasticity, etc. medicines, and we want to do everything possible to avoid an unplanned pregnancy.

Some women have been instructed by their doctors not to get pregnant while taking certain medicines. Click To Tweet

When I got diagnosed, I didn’t have any kids. My husband and I did want to have a family. But my neurologist advised that if we wanted to get pregnant, I should stop taking my DMT a few months before we started trying. After my first son was born and I stopped breastfeeding, we went through the same pattern when we wanted a second child. Once I had my second child, we chose a permanent sterilization method since our family was complete. Thanks to insurance coverage, we were able to have our family in the safest possible way for both mother and children.

Thanks to insurance coverage, we were able to have our family in the safest possible way for both mother and children.Click To Tweet

The New Dilemmas

Would you want to avoid pregnancy while you’re taking medicines that could cause fetal abnormalities?

I know I’m not the only person whose doctor recommend using birth control while taking MS medicines. He also advised waiting a few months after stopping the medicines before trying to get pregnant. If you’re using the family fertility planning method touted in the White House memo, you have a 1 in 4 chance of getting pregnant anyway.

But what choice would I have? I might not even be able to get permanently sterilized if I wanted to make sure I never got pregnant. Catholic-owned hospitals have refused to allow sterilization surgeries (ex. getting your tubes tied), even when recommended by the woman’s doctor. In some areas, up to 40% of hospitals are Catholic-owned, which means a woman may not have a hospital nearby within her insurance network that would perform the surgery.

Do you have to avoid essential medical treatment to eliminate the increased risk of fetal abnormalities?

Evidence shows that women who are diagnosed with MS should start disease-modifying therapies as soon as possible. The average age at diagnosis is 35, so most women with MS are still at child-bearing age.

If a woman decides not to take the medications, she is far more likely to have more frequent and more severe attacks. She is also far more likely to see an earlier and more serious disease progression.

Women who can’t access affordable birth control are left with this dilemma:

Do they avoid taking medicines which could improve their long-term health OR
Do they follow medical advice and take the medicine, knowing that they have an 85% chance of getting pregnant within a year OR
Do they take the medicine and follow political advice to follow the family planning method, know they still have a 1 in 4 chance of getting pregnant anyway?

But I Don’t Have To Worry…

Yes, you do. There are plenty more health care issues that could follow birth control down the slippery slope that would have a terrible impact on people with MS or other chronic illnesses.

We’ve already been introduced to a few scary ideas that legislators have tried to put on the plate, including:

Drastic cuts to Medicare and Medicaid funding
Moving coverage to state control without providing sufficient funding for a high-risk insurance pool
Removing pre-existing condition protections
Allowing insurance companies to charge older customers five times the premium of a younger customer (currently the maximum is three times)
Increasing premiums for MS patients by more than 100%
Removing prescription drug coverage requirements
Removing mental health coverage requirements

So Speak Up!

Do not remain silent. Do not dismiss birth control coverage as Someone Else’s Problem. Do not assume that you lack the power to help. Here are a few things you can do:

Donate to advocacy organizations. If you have the financial means to do so, you can donate to organizations like the National MS Society or the American Public Health Association.
Become an MS Advocate. The National MS Society offers plenty of opportunities for you to get involved, both in the community and from home.
Educate people. If you’re in a conversation with someone, politely join in and point out how the reasons people with medical conditions may need birth control. People may not understand that birth control is not a cut-and-dried moral situation, but one that can raise moral issues for others.
Call your elected officials. The government has an online contact information directory.

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