I recently read several articles about drug trials that are widely separated by both time and subject, but because of circumstances in my life, they are somewhat related. I came across the first article while doing research on a drug my mother took while she was pregnant with me. I found a link to the second one through Memory People, a Facebook support group for patients, caregivers, family members, and advocates who have been touched by Alzheimer’s and related dementias.
When I was conceived, there was doubt as to whether Mom would be able to carry me to term, so the doctor gave her something to speed up my development. It must have worked, or at least something did, because I went past full term, weighing in at over 9 pounds and sporting a full head of dark curls.
I was a healthy kid, but my teens and twenties were plagued with cysts. I found a fibroid in my breast, the first of many, when I was 16; in my early 20s I developed ganglion and fibrous cysts in my hand; and a grapefruit-sized fibroid required a hysterectomy when I was 29. All the cysts were benign, and I’ve been pretty healthy since then, but I’ve often wondered if any of this was related to the drug Mom took.
Dad once told me the name of the drug was Lipilupin, but several internet searches yielded nothing remotely similar to that. But a couple of weeks ago I tried again and found an article called “The DES story: long-term consequences of prenatal exposure.” It’s actually Chapter 8 of a book titled “Precautionary Principle in the 20th Century: Late Lessons from Early Warnings.” DES is a synthetic estrogen that was formulated in 1938 and put on the market in the late 1940s as a prevention for miscarriage. The article contained lots of charts and words I didn’t understand, but the gist is that there was probably a lack of adequate testing before the drug was introduced.
In 1970, studies linked a rare form of vaginal cancer (vaginal clear-cell adenocarcinoma) to exposure to DES in utero. Subsequent studies showed that “DES daughters” may develop a wide range of reproductive tract abnormalities including uterine fibroids. I was born in 1947, so I’m not sure if the timeline is right. In addition, I didn’t find any reference to Lipilupin, although DES was marketed under 200 different brand names.
Inadequate Drug Testing
I don’t know if I found the answer to the questions about my birth and my health, but I did find out that inadequate and faulty drug testing can have unintended consequences. There is some indication that grandchildren of DES recipients may have been minimally affected, but it’s way too soon to know about the great-grandchildren. If more studies had been done, generations could have been saved from the affects of DES. It was with all this in mind that I came across the second article.
One of the Memory People members posted a link to Alzheimer’s Prevention Initiative, a registry that provides an opportunity to help advance Alzheimer’s prevention research through education, advocacy, and study participation. She also pointed out an article on the site titled “Test of Alzheimer’s Drug Gets Large Federal Grant.” It said that, following years of unsuccessful trials looking for treatments and cures, the focus is shifting to those at risk for developing Alzheimer’s in an attempt to find a way to prevent or delay the disease.
The article briefly outlined a study scheduled to begin in 2015. Participants in the study will have two copies of gene ApoE4, one from each parent. This gene greatly increases the risk of getting the disease. Since Mom died with Alzheimer’s and Dad died with vascular dementia, I might qualify. I registered and will watch for updates about the study and notices of applications to participate. I’m not crazy about being exposed to another untested drug, but if by doing so I can help prevent long-term consequences to my children and grandchildren, I’m willing to take the risk.