bad medicine Archives - Hormones Matter

DES – The Drug to Prevent Miscarriage Ruins Lives of Millions

Published on February 23, 2017

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Let’s rewind time. We’re in 1970. My mum, like millions of other women, puts all her trust and last hopes of carrying a successful pregnancy in the hands of health professionals. She accepts to take a drug recommended and prescribed in good faith by her doctor without knowing that years later it would have devastating consequences not only on her health but the health of her daughter and possibly her grand-children. She takes Diethylstilbestrol (or DES in short), the first synthetic man made female sex hormone (oestrogen) widely prescribed for public use in the mistaken belief that it would prevent miscarriage and loss.

Now let’s fast forward. We’re in 2001 three decades after my mum took DES. I’m in a hospital ward anxiously waiting for the results of a scan. I’m pregnant. “We’re so sorry, but you know 1 out of 5 pregnancies end in miscarriage. You should try again” I’m told. My head is spinning. What did my Mum said again? DES, yes DES, I remember now. She mentioned when I was just a teenage girl that research had confirmed that the drug taken throughout her pregnancy to prevent miscarriage was responsible for all sorts of dreadful health issues including a rare form of vaginal cancer, infertility and high risks pregnancies. What if this was responsible for the loss of my baby, I ask. “DES? What is DES? Never heard of it!” replies the consultant on duty that day. ”If you keep miscarrying, we’ll investigate further” he adds.

I don’t listen and seek help and advice from an organization founded by a mother who had been prescribed this drug and advocates for the many families affected by DES. A Professor, expert in fertility treatment, confirms a congenital uterine malformation typical of DES exposure and confirms that I’m a DES daughter, one amongst millions of other women whose mothers took Diethylstilbestrol during pregnancy.

If you were born or pregnant in the US between 1938 and 1971, and until the mid-’80s in some European countries, you may have been exposed to DES too and you may suffer from the consequences of this drug without even knowing it. Diethylstilbestrol has put the mothers prescribed the drug, their daughters and sons exposed in utero, and potentially their grandchildren due to the trans-generational effects of this synthetic hormone, at risk for serious health problems including but not limited to: structural damages in reproductive organs, high risk pregnancies and miscarriage, cancer, infertility and possible immune system impairment. Many other suspected effects are still awaiting further research but funding is critically missing.

Often referred to as the “Silent Thalidomide” by the media, diethylstilbestrol is considered as the world’s first drug scandal. Despite evidence of its ineffectiveness and danger, it continued to be prescribed to pregnant women beyond 1971 when the first link between DES and a rare form of vaginal cancer (clear cell adenocarcinoma) was formally established in Boston, Massachusetts.

Even though this drug was given to pregnant women decades ago, it affects and continues to affect millions of families today and possibly for many years to come. Yet, diethylstilbestrol has been and still is a well-kept secret, a taboo subject not only in families but within the medical community too.

No drug manufacturers, health authorities, nor governments have ever taken responsibility for the long term health side effects of this drug.

Don’t Pharmaceutical companies have a responsibility to their consumers to provide a product that is safe?

Four sisters recently filed a lawsuit against drug manufacturer Eli Lilly. They feel that their breast cancer was a direct result of Eli Lilly’s negligence. Eli Lilly has never accepted responsibility nor apologized for the DES tragedy, even though the company has paid millions in out-of-court settlements and verdicts to DES Daughters and Sons who suffered injuries from their exposure. The Melnick sisters reached a settlement with the drug company a few weeks ago, but Eli Lilly has not accepted any responsibility. Outraged by Eli Lilly’s failure to fess up on DES, Patricia Royall, a plaintiff in one of the 72 pending DES breast cancer lawsuits in Boston federal court and the District of Columbia, is now calling on the general public to sign a petition urging the drug manufacturer to apologize for the DES tragedy. From all corners of the globe, Australia to France, the UK to the Netherlands, Ireland to the USA, DES victims are crying out for justice.

Diethylstilbestrol is a world drug disaster yet very few people know about its tragic health consequences or have even heard about it. Public health awareness campaigns are vital to reaching out to the millions of people who have been exposed to this harmful drug. People who are not aware of their exposure to DES are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result. It is equally important to educate the next generations of health professionals who have never heard of DES so they can provide adequate care to DES victims for years to come.

DES Daughter DES is not something of the past. People who have been exposed to this drug years ago are battling with health issues and fighting for their lives as I’m writing this blog post. Who knows what health problems the grandchildren of the mothers who were prescribed this drug will have to deal with as they grow up. I want my daughters to receive adequate medical care and monitoring if they ever have to suffer the consequences of this drug. This is why together with my husband we support the great work done by the very few International DES Action Groups who are providing valuable information and are advocating for the DES victims.

If you’re concerned that you may have been exposed to DES, please don’t let doctors dismiss your concerns. Contact your local DES Action Group for professional advice and guidance. Connect with me and other DES daughters via my blog: DES Daughter Network and my website: Journal of a DES Daughter. You have the right to know.

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This article was published previously on Hormones Matter in February 2013.

Tackling the Contraceptive Conundrum: Questions and Answers

by Chandler Marrs, PhD

Published on August 17, 2015

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Last weekend I had the privilege of speaking at a much overdue conference on hormonal contraceptive safety – the Contraceptive Conundrum. I was charged the unenviable task of giving the ‘overview of everything’ talk and providing a framework through which to view these medications; not easy in a 45 minute presentation. Needless to say, there was a tremendous amount of information omitted from my talk. I will be sharing some of this information in series of blog posts over the coming weeks. The presentation was videotaped and I will post it when it becomes available. For the time being, however, I would like to offer up the power point (below) and answer some of the questions posed by audience members that I was unable to address or address fully given the time constraints.

Best Medical Journals

One of presumably less controversial questions I was asked was which medical journals I prefer. As it turns out, even this question inspires indignation on social media. I am strong proponent of open access journals and the entire open data movement. I believe that health research should not be hidden behind a paywall and the raw data behind drug safety trials ought to be readily available for independent analysis and scrutiny. Indeed, all science should be in the public sphere and a part of public discourse. As a matter of course, science should not be available only to the privileged few. The mere suggestion that I prefer open access journals, however, ignited a heated debate on Twitter; the instigators of which suggesting this preference supersedes attempts to access paywalled articles. Let me assure you it does not. I always track down primary sources. Nevertheless, for the reasons stated above and many more, my preference is for open access journals.

Hormonal Contraceptives and IVF

Another audience member asked about the research and risks associated with the use of hormonal contraceptives and IVF. I should preface my response with a disclaimer: I am no expert in IVF, however, I have written about fertility medicine on a number of occasions (here, here, here), mostly with regard to this specialty’s hubris and egregious lack of insight or concern regarding the longer term consequences of many of their practices. As a point of consideration, I write about the hubris and lack of research that pervades all of women’s healthcare. Those are my biases, do with them what you will.

As far as the use of hormonal contraceptives and IVF are concerned, the research is mixed at best and unacceptably limited in scope. The reasoning for using oral contraceptives in advance or in conjunction with IVF treatments ranges from the ease of cycle scheduling to a purported increase in oocyte yields. From an IVF expert:

In my view, it is not only acceptable, but even ideal to take the BCP [birth control pills] for at least one cycle prior to starting COH [controlled ovarian hyperstimulation] in preparation for IVF. Doing so allows one (without prejudice) to better plan and time cycles of IVF. Furthermore, since the BCP also suppressed LH, it is often especially advantageous in older women, in women with diminished ovarian reserve and in those with PCOS (in whom high LH levels can compromise egg/embryo quality).

Despite the perceived utility of these medications, some research suggests that perception diverges from reality. In fact, the use of oral contraceptives in IVF may not be beneficial in increasing oocyte yields or pregnancy outcomes, especially in older women with limited oocyte reserve. A recent study, Does hormonal contraception prior to in vitro fertilization (IVF) negatively affect oocyte yields? – A pilot study found that even in young women with sufficient oocyte reserve, combined oral contraceptives diminished the number of oocytes retrieved compared to women who were not given oral contraceptives. The androgenic contraceptives were most deleterious. This comes on the heals of a Cochrane Review that found that not only was there limited research on the topic, but oral contraceptives resulted in poorer pregnancy outcomes. Missing from these data are the very real risks to maternal health mediated by the cocktail of hormones used in IVF (Lupron being top among them, followed by dexamethasone) and the potential long-term consequences to the health of the children born from IVF. Despite the lack of data and the often contradictory research findings, the practice of using oral contraceptives in IVF is well entrenched.

Hormone and Other Differences Between Oral Contraceptives, Depo Provera, NuvaRing and the IUDs

From the hormonal perspective, the various forms of contraceptives differ mostly by the type of synthetic progestin used. Oral contraceptives use a variety of progestins (see here), while Depo Provera contains medroxyprogesterone, hormonal IUDs utilize levonorgestrel and NuvaRing uses etonogestral. Most of the oral contraceptives contain the synthetic estrogen, 17a-ethinylestradiol, as does NuvaRing. Depo Provera is a progestin only, injectable form of birth control while the hormonal IUDs are a slow-release progestin only contraceptives. In addition to the differences in formulation and dose, each of these methods utilizes a different different delivery mechanism. The delivery mechanism will affect how much of the drug is absorbed and bioavailable, how quickly, the duration of availability, and those variables (along with several others), then affect the risk for side effects. Videos on pharmacokinetics and pharmacodynamics can be viewed here (dynamics video follows).

How Do Oral Contraceptives Affect Mitochondrial Morphology and Replication?

While there is a noticeable lack of data in this area, there are clear indicators that ethinylestradiol induces both structural and functional damage to mitochondria in the liver and the kidney, at least in rodents. Liver biopsies of women using oral contraceptives have also demonstrated structural changes in mitochondria. I would suspect similar changes in mitochondria throughout the body.

Indirectly, we know that reduced endogenous estradiol concentrations (here, here, here) damage mitochondria and that women who use oral contraceptives have lower endogenous estradiol concentrations. We also know that oral contraceptives deplete vital nutrients that are critical for mitochondrial functioning. And we know that the metabolism of 17a ethinylestradiol, the estrogen used in hormonal contraceptives, oral and otherwise, does not follow the same path as endogenous estradiol, and thus, likely damages mitochondria. (Ethinyl estradiol metabolism produces what are called catechol estrogens. Catechol estrogens are both directly (DNA adducts) and indirectly (mitochondrial reactive oxygen species – ROS- evoked as a byproduct of the metabolism) implicated in animal models of cancer.) Complicating matters, however, endogenous estradiol depending upon the concentrations, can have both pro – and anti-oxidant properties and impact mitochondrial functioning both positively and negatively. Nevertheless, I would argue that the synthetics derail the balance of endogenous hormones and because of their very real structural and functional differences, evoke a number of processes that are not only distinct from those of the endogenous estrane hormones but are likely damaging in ways we have not yet begun to understand.

Presentation

Birth Control, Big Money and Bad Medicine: A Deadly Trifecta in Women’s Health from Hormones Matter

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Define Better: Too Many Prescription Medications for Kids

by Chandler Marrs, PhD

Published on November 10, 2011

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Medication Madness

This hard-edged rap video flew around the social media outlets last week- Define Better. The music video tackles the issue of over-medicating our children and calls into question the industry that regularly pushes to expand its market share for old drugs. Two markets that have seen an exponential increase in market share, particularly for psychiatric drugs, are women (including pregnant) and children.

Prescription Medications during Pregnancy

Where in generations past, pregnant women were prohibited from taking any medications lest these meds cross the placenta and harm the fetus. As of 2006, 30% of all pregnant women were taking at least one psychotropic medication (DeVane et al. 2006), despite the documented birth defects and other complications associated with these medications.

Giving Children Antidepressant Medications

Similarly, it was unheard of to prescribe antidepressants to children under the age of 16; not only because these medications have neither been tested nor proved effective in children, but because they cause ‘paradoxical’ reactions – elicit suicidal ideation and suicide itself.

A recent report in the Journal Health Affairs supports these claims. Researchers found that “between 1996 and 2007, the number of visits where individuals were prescribed antidepressants with no psychiatric diagnoses increased from 59.5 percent to 72.7 percent and the share of providers who prescribed antidepressants without a concurrent psychiatric diagnosis increased from 30 percent of all non-psychiatrist physicians in 1996 to 55.4 percent in 2007.” Similarly, another study published in the American Journal of Public Health found that the very medications drug companies marketed most aggressively frequently offered the least clinical benefit and had the potential for the most harm to patients.

Understand what these two reports are saying, drug companies are aggressively marketing those drugs that offer the fewest clinical benefits and the most harm to patients – and we’re buying them! Whether we’re buying them because our doctors prescribed them readily or because we’re demanding the drugs from our doctors, is unclear. What is clear, is that we’ve relinquished personal control over our own health and our children’s health to marketing. We need to regain that control and to do so requires that we ‘Define Better’.

DeVane, CL, Stowe ZN, Donovan JL, Newport DJ, Pennell PB, Ritchie JC, Owens MJ, Wang, JS. Therapeutic drug monitoring of psychoactive drugs during pregnancy in the genomic era: challenges and opportunities. J Psychopharm. 2006; S 20(4):54-59.