I can’t believe the letter I’ve just had from my doctor’s surgery, I am furious. I have suffered from severe migraines for years, and have had one stroke already. (people who get migraines are 3x more likely than the general population to have a stroke.) I’m at risk of another stroke. I’ve been prescribed a drug called topiramate for a while now, to reduce the frequency and severity of the migraines.
I’ve just received a letter from the doctor’s surgery saying that, due to new guidance, as topiramate can cause birth defects, all women of childbearing age who take it MUST be put on birth control, regardless of whether they are sexually active. Which, as I’m sure you can tell from my username, I am not. I don’t want to be pressured and bullied into taking contraceptives. Hormonal contraceptives have a lot of side effects, including increased risk of stroke. Apparently the wellbeing of a foetus who will never be conceived is more important than the wellbeing of a woman who actually exists! Even non-hormonal contraception is something I don’t want, most of it involves embarrassing and painful procedures that I do not want to be subjected to. And quite frankly, it’s the principle of the thing.
So I am going to have to stop taking this migraine med, which will be awful for me, because all the other migraine meds either don’t work for me, or are unsuitable for stroke patients. I’ve even had nerve-blocking injections in my head from the neurologist which only worked for a couple of weeks, then my migraines came back with a vengeance. But no, a hypothetical foetus matters more. Is this not blatant sexual discrimination? I am so angry.
EDIT: You know what is extra infuriating? The letter didn’t even offer the option to choose to come off the topiramate, or keep it and take the contraception. The letter just demanded that I go on contraception immediately. No “if you’d like to keep taking the topiramate please make an appointment to get contraception,” just a very rude and authoritative demand that I make an appointment to be put on contraception immediately.
EDIT2: I’ve just read the letter more thoroughly. It says the problem with topiramate is that the babies of women who take it while pregnant are at a higher risk of ADHD and autism. Just think about what they’re saying. They’re saying ADHD and autistic people are so unwanted by society that it’s better to force women to go without medication they need, or force them to take meds they don’t want and that could have detrimental side effects for them, than let more autistic/ADHD people come into this world.
What a shit show.
CW: gendered medicine, neurodiversity, institutional ableism
In your favour… and I should caveat this with a caution that I don’t know much about the British healthcare system except that doctors should follow the NICE guidelines and the government guidance…
It looks like you’ve received a standard letter without anyone considering your specific case. You should arrange an appointment and argue your case. There is room in the guidelines for you to succeed.
The NICE guidelines for topiramate appear to have been updated recently.
I’m going to cite the gov UK website because apparently it’s a breach of the user agreement to cite the NICE guidelines directly in anything that might count as advice to patients (what a fucked up system!). Note there may be slight differences in the two versions (frustrating but this does open the possiblity of hammering a wedge into the rules to support your case).
From the gov.uk guidance
- topiramate should not be used in women of childbearing potential unless the conditions of the Pregnancy Prevention Programme are fulfilled. This aims to ensure that all women of childbearing potential:
- are using highly effective contraception
- have a pregnancy test to exclude pregnancy before starting topiramate
- are aware of the risks from use of topiramate
- please see specific advice for prescribers and advice for dispensers ensure women of childbearing potential sign the Risk Awareness Form, you will receive materials including the Risk Awareness Form by post in the coming weeks to use in the implementation of the Pregnancy Prevention Programme
Advice for prescribers:
- all women of childbearing potential being treated with topiramate- containing medicines must follow the requirements of the Pregnancy Prevention Programme. These conditions are also applicable to female patients who are not sexually active unless the prescriber considers that there are compelling reasons to indicate that there is no risk of pregnancy
- for all new women of childbearing, potential prescribers must:
- assess their potential for pregnancy and discuss the need for them to be on the Pregnancy Prevention Programme
- ensure that pregnancy has been excluded, by means of a negative pregnancy test, prior to starting treatment with topiramate
- inform them of the potential risks of topiramate use in pregnancy and counsel them on treatment options
- discuss with them the need to use highly effective contraception throughout treatment and for at least four weeks after the last dose of topiramate. See guidance from Faculty of Family Planning and Sexual Health on potential drug interactions with hormonal contraceptives and what this means for topiramate
- complete the Risk Awareness Form with the patient (or responsible person)
- provide a copy of the Patient Guide to the patient (or responsible person)
- for existing patients, prescribers must:
- identify all women and girls of childbearing potential on topiramate and invite them in for review
- complete the Risk Awareness Form with the patient (or responsible person) and at each annual review
- provide a copy of the Patient Guide to the patient (or responsible person)
The guidelines say to me that you can refuse contraception so long as you otherwise satisfy the ‘Pregnancy Prevention Programme’ (see below).
One way of reading this is that the doctor only has to explain all the risks to you or a future child. This wording is strong but it does not appear to mandate contraception in all cases; it’s just strongly advised after having a conversation with you.
Then later, the NICE guidance seems to confirm that contraception is advised but not mandatory. Again, I can’t quote from it. Note: I don’t know whether a British court has ever decided whether NICE ‘advice’ is merely ‘advice’ or an instruction; the doctor could behind that interpretation (or potential interpretation) if there is one.
What does the pregnancy prevention plan[PDF] say?
This gives us the answer you’re looking for (my emphasis):
I am taking topiramate and not planning to have a baby
Your healthcare professional will review your treatment regularly, and at least once a year.
During these visits, your healthcare professional will discuss and complete an Annual Risk Awareness Form with you. You will be asked to sign this form. This is to make sure you are aware of all the risks related to the use of topiramate during pregnancy and the need to avoid becoming pregnant whilst taking topiramate.
During the annual review your healthcare professional will decide with you whether the benefits of topiramate outweigh the risks for you.
If you are taking topiramate and able to have a baby, always use effective contraception (birth control) during your treatment. Topiramate can affect how well some hormonal contraceptive (birth control) methods work. Using an additional barrier method, such as condom or vaginal ring pessary/diaphragm may be necessary.
If you and your healthcare professional agree that there are compelling reasons that you are not at risk of becoming pregnant then you may not need to use contraception (birth control).
This joint decision should be documented in your Annual Risk Awareness form.
Talk to your GP, professional at the sexual health and contraception clinic, or contraception service in community pharmacy if you need advice on contraception (birth control).
In conclusion, if you book an appointment with your doctor and discuss and sign your Annual Risk Awareness Form, you should be good. [EDIT: before signing, you’d want the form to reflect that you will not / do not want to take contraception.] You may want to explain your sexual orientation in this appointment. Make sure it is on your record as it will be relevant to the suggestion, below.
If this doesn’t work—
I think you have mentioned cancer treatment before. If I’ve remembered correctly, raise the issue of contraindications for contraception and cancer treatment and carcinogenic effects of contraception. That is: the doctor should consider whether contraception will or could make you ill or risk any of your other treatment. You can cross-reference any other medication that you have to take with the contraception options on the NICE website, too.
Another factor is that sexual orientation is a protected characteristic under the Equality Act 2010. The doctors might be in breach of that statute if they refuse to take your sexual orientation into account. Now, I wouldn’t tell your doctor that you are going to sue them for discrimination! That’s a terrible plan because you want them on side and you don’t want them to get defensive.
You may want this on your record now so that if the appointment doesn’t go your way, you can follow up with a letter: you would ask for a review of your case and an explanation as to why the doctors think that their actions are compatible with the equality legislation, asking them to reconsider. You’d probably want actual legal advice from an actual lawyer at that point, if it gets to it.
A final point is that they can’t actually make you swallow the contraception if you request an oral tablet. They can only insist that you are prescribed a contraceptive and that you pick it up. Just keep them in a drawer or bin them. If it comes up on later blood tests you can think of another plan/defence at the time (if they ever even look for it).
Thanks, this is helpful. I’m going to read through it a few times to make sure I understand it. Maybe you or someone else on here might help me write a letter about this to the doctor?
You’re welcome. If it helps, these are the key bits with all the faff deleted.
From the gov.uk guidance:
- topiramate should not be used in women of childbearing potential unless the conditions of the Pregnancy Prevention Programme are fulfilled.
The pregnancy prevention plan[PDF] says:
Your healthcare professional will review your treatment [and] discuss and complete an Annual Risk Awareness Form with you. You will be asked to sign this form. This is to make sure you are aware of all the risks …
During the annual review your healthcare professional will decide with you whether the benefits of topiramate outweigh the risks for you. …
If you and your healthcare professional agree that there are compelling reasons that you are not at risk of becoming pregnant then you may not need to use contraception (birth control).
If I’ve read your comments right, your compelling reason is your sexual orientation.
You can probably ignore much of the rest of what I wrote as you’re unlikely to need it. If the doctor doesn’t listen to you, you can think about letter-writing. I can give some pointers. Remember, I’m not an expert, but that shouldn’t be an issue because it shouldn’t get that far.
You can be confident in your appointment. The letter you received sounds like it is a bit inaccurate. The guidance is on your side because it clearly states that you do not have to take contraption with topiramate if you understand the risks and have a good reason as to why you’re unlikely to get pregnant.
I hope you can get this sorted easily!
Thanks so much. I’m going to use this to compile a letter and send it. It’s really difficult getting an actual appointment these days.
Here is the letter I’ve written to the doctor:
**Dear Dr R,
I have received a latter stating that as I am a woman of childbearing age taking topiramate, I must be put on birth control unless there is a compelling reason why pregnancy is not possible. I have not been sexually active for 18 years, have no intention of being so again, and I started going through the menopause almost a year ago.
As a stroke patient, hormonal contraceptives put me at higher risk of stroke, and for my own reasons I am not willing to accept any kind of contraceptives. I consider my reasons for not needing contraceptives to be compelling and I would like to continue to receive topiramate.**
The reason I put “for my own reasons” is because I don’t want to sound threatening right from the start if I can get it sorted out amicably and also it leaves it open for me to think about what to write later if I need to fight. I was thinking I might have three angles to argue this is discriminatory if it comes to that:
Insisting someone needs to take a drug only because they’re female is gender discrimination. I could bring my asexuality into it. Although I’m not religious, as a young child I was brought up extremely catholic. They catholic church teaches that contraception is unacceptable. I could pretend I’ve returned to my childhood religion and argue discrimination on religious grounds. What do you think?
That’s clear and to the point. I agree that it sets a good tone – it’s not threatening.
One small change needed, from ‘latter’ to ‘letter’ in the first sentence.
I have one optional suggestion that would signal that you know about the guidance. You could mention that you are happy to sign a risk assessment form as part of the pregnancy prevention plan to confirm that you are fully aware of the risks and satisfied that you will not get pregnant. I do think you already cover this, though; maybe it’s something to add in a follow-up if they were a bit stubborn.
All-in, this looks like a good letter and I hope it goes well for you. (I completely understand if you don’t want to, but otherwise, please let me know how it goes as I’m rooting for you.)
That’s a good idea, thanks. I dropped the letter off this morning but if they give me any bother I will mention the risk assessment form. I’ll definitely let you know what they say.
Could you be prescribed the bc and just not take it? Lying seems like the least bad option unless they are going to be testing that you are actually taking it somehow.
I’ll think about it if all else fails. However I have a lot f blood tests and check ups, I don’t know if they’d notice. Also it’s an extra heassle with getting the prescriptions filled each month.