More DES answers

After the Executive Director of DES Action wrote me her previous letter, I asked her if I could post it on my blog, and she graciously agreed. She read my first post, which was more questions than answers, so I thought I’d post her second letter as well, since it contains more information and answers my questions.

First is part of my letter to her, which I am posting because it has some specific questions:

….My main reason for doing this is to reach women of childbearing age who be DES daughters but wouldn’t know it because doctors assume they’re too young, having been born after 1971. It also would contradict (with a bit more authority than just my say-so) the prevailing implication on the web that DES was banned in 1971, rather than just “warned against.” I know that DES is still available to be used (I used to work at a pharmacy, and we had to compound some pills for an elderly man in the nursing home for cancer [Note–DES is no longer available–that was a mistaken assumption on my part, as is shown by the next letter]), but do you have a date for which it would almost definitely never have been used on pregnant women–an effective ban? Obviously, it was used by at least my mom’s doctor as late as 1976, but could I be the last of the DES daughters born? Or could there have been more after me–up until the ban in cattle feed, for example? I’ve read from numerous sources that 5-10 million women took DES from 1938-1971; but if it was in 200 products including PNVs, then that number seems a little low–especially with the “Baby Boom” being chief DES years. There is the implication that babies after 1971 can’t be affected, but I’m proof that’s incorrect. How many more millions of women and babies have been affected after “doctors stopped prescribing it”?

And now her answers:

Your blog is very thorough and well informed. Yes, most certainly you can post my response. If possible, please also include the DES Action web site: www.desaction.org. It is a good resource and has been kept current on the latest research.

For example, you reference the possibility of DES Daughters having an increased risk for breast cancer. Since the article you read came out, that increased risk has been proven true – so it isn’t just a possibility anymore. DES Daughters need to know that, so they can stay vigilant in getting mammograms. It’s easy to skip a year because nobody likes getting them. But, if you know you are at increased risk for the disease it is most likely that you have a mammogram every year. That’s why DES Daughters need to know of their exposure and stay current on the latest information about it. Your blog certainly helps get the word out.

I have a question for you – when did you work in the compounding pharmacy? As I understand it, while DES was contra-indicated for pregnant women in 1971, the FDA finally acted in 2000 to withdraw its approval of DES, which is when, as I was led to understand, DES was no longer available for any human use after that. (DES was used for prostate cancer but in recent years other drugs have become more popular for that use. Also, DES was used to soften tumor tissue in end-stage breast cancer treatment – as a palliative measure. Those are the only two recent uses that I know about and none involved pregnant women).

My guess in your case is that your mom was exposed to DES in some way while pregnant with you – and we may never know how. But I don’t believe the DES shots she was given to dry up her milk is what has caused your cockscomb cervix. That’s because DES works on the developing fetus as the reproductive organs are being formed, usually early in pregnancy. Your mom’s exposure after you were born could not have affected you in that way.

Also, scientists tell us that DES leaves the body so it isn’t likely to have affected your development if your mom had DES shots a year or so earlier. But you should urge your mom to never skip a mammogram because DES mothers have a slightly increased breast cancer risk. In her case it doesn’t matter when she was given the drug (pregnant or not) because she was exposed to it.

The real villains in this story are the greedy drug companies. Because DES was not patented and was easy to make, all sorts of different pharmaceutical companies produced and promoted DES to doctors. In the late 1940s animal studies showed it caused cancer in laboratory mice. That should have been a warning sign but it wasn’t. Then in 1953 a scientifically valid, journal published research study showed that DES did not work. Some doctors read it and stayed away. But, drug companies swung into action. For many years afterwards they promoted DES use to doctors in medical magazine ads, in trinkets and notepads, in lectures and junkets, etc. In the face of so much positive advertising, doctors who’d read the research started forgetting about it. Clearly it was easy to believe the sincere drug reps who came to their offices every week with lunch and gimmies. Unfortunately, that’s how doctors learn about drugs – even today. Our system is screwed up. [As a former pharmacy tech, I can testify to this as well. We could always tell when the drug reps came through town — all the doctors would change all of their patients to the newest wonder drug.]

On the DES Action web site we try to make clear that Big Pharma is to blame for the DES tragedy. On the home page, front and center, is a picture of a baby and if you click on it you can learn about that so-called Healthy Baby Ad. On the right side of the home page is a box saying we have been waiting for an apology from drug makers. The clock ticks off the time as it goes by.

So, I hope this information is useful to you. I’ve put a packet of information in the mail to you so you can watch for it soon. Let me also put in a plug for our organization. I hope you consider joining (a membership form is included in the packet) – so you can stay current on the latest about DES exposure. You clearly are seeking information and understand it when you read it. Thank you for posting to your blog so others can learn, too. Information really is power when it comes to DES exposure.

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