EXPOSURE ESTIMATE IS HIGHER

DES Action Australia-NSW has made enquiries to all State Cancer Registries and found there are 20 further cases of clear cell adenocarcinoma of the vagina/cervix (CCA) reported to those Registries prior to 1982. Consequently, the estimate of the upper range figure for DES exposure in Australia has increased.

We can now calculate the estimate in Australia to be 168,000 - 648,000 DES exposed mothers, daughters and sons.

In data held by the Therapeutic Goods Administration to present, there have been 3 mortalities due to DES associated CCA. However, Australian Institute of Health and Welfare data up to 1997 for CCA cases in the general population shows 8 deaths in total.

Red Tape with DES in Oz

As we know, it is possible for deleterious health effects to arise after harmful drugs/medical devices have been withdrawn from the Australian Register of Therapeutic Goods (ARTG). It has certainly been the case for DES with the recent finding of increased risk of developing breast cancer in DES daughters over age 40.

In February this year, DES Action Australia-NSW learned in Government correspondence that no single body has the responsibility for providing advice about the risks of medicines after their withdrawal from supply. Thereafter, it is only a stated possibility that the Therapeutic Goods Administration and the Department of Health and Ageing will take actions in dealing with the ongoing health care of affected Australians.

In seeking to have this matter addressed to ensure the Australian DES community is kept informed, DES Action Australia-NSW sent a letter to Prime Minister Kevin Rudd. However, there was no reply. A further letter on this matter has been sent to the current PM Julia Gillard (cc Minister for Health and Ageing, Australian Chief Medical Officer).

In light of the continuing research of DES effects on those exposed and subsequent generations and the ever increasing list of harmful drugs/medical devices withdrawn from the ARTG, this is an important issue.

NUMBERS EXPOSED TO DES IN OZ

There are currently 18 case reports of DES associated clear cell adenocarcinoma of the vagina/cervix held by the Therapeutic Goods Administration. However, the figures for this cancer type held by the Australian Institute of Health and Welfare (AIHW) provide a more reliable estimate for DES exposure in Australia. Reports of this cancer type to the AIHW are steady.

The Institute's current data (1982-2006) shows 42 cases below age 50, and 142 cases across all ages for clear cell adenocarcinoma of the vagina/cervix in the general population. From this information, we can calculate the current estimate in Australia to be 168,000 - 568,000 DES exposed mothers, daughters and sons.

We are informed that the AIHW will be able to provide more data in December.

Hopes Boosted For DES Apology

Hopes are now rising for the US Apology for DES. Caitlin McCarthy (US DES daughter and screenwriter) has news that Senator Scott Brown is sending out the following message to everyone who has written to him about the DES apology:

Thank you for contacting me regarding your concerns about the effects of diethylstilbestrol (DES). I value your input on this and other issues and appreciate hearing from you. As you may know, DES is a synthetic estrogen that was developed to supplement a woman's natural estrogen production. Originally prescribed by physicians in 1938 for women who experienced miscarriages or premature deliveries, DES was considered safe and effective for both mother and developing baby. Following a 1971 published report citing health concerns for mothers and children, the Food and Drug Administration (FDA) subsequently advised physicians to discontinue prescribing DES in pregnant women. By 1998, the drug was removed from the market for reasons of safety and efficacy in the United States. According to the Centers for Disease Control (CDC), approximately 5-10 million persons were exposed to DES between 1938-1971, including pregnant women and the children born from those pregnancies. I understand your concerns regarding the exposure of millions of women and children to DES since 1938. At this time, please know that I have been working with my Massachusetts colleague, Senator John Kerry, on this issue. We have sent a letter to Commissioner Hamburg at the Food and Drug Administration to inquire about an apology from the FDA in recognition of the hardships endured by families across the country. Again, thank you for sharing your thoughts with me. If you should have any further questions or concerns, please do not hesitate to contact me or visit my website at www.scottbrown.senate.gov.
Sincerely Scott P. Brown United States Senator

NOW is the right time for Australians to exert more pressure on US Senators Kerry and Brown by supporting the DES apology. Here, Down Under, we can certainly do with the apology's flow on benefits!
Addresses below to write in support:

Senator John Kerry (MA)
United States Senate
218 Russell Senate Office Building
Washington, DC 20510
USA

Senator Scott Brown (MA)
United States Senate
317 Russell Senate Office Building
Washington, DC 20510-2102
USA

Vale Pat Cody - DES Action Founder

We have sad news of the passing of Pat Cody, the founder of DES Action USA. Pat was ever the consummate activist and she was a remarkable women. During the process of our establishing DES Action Australia-NSW, Pat was a great mentor and friend. If not for her invaluable ideas and encouragement, the group may not have lifted off the ground. She will be very much missed.

In photo: Pat Cody with Dr Jules Black (Medical Spokesperson for DES Action Australia-NSW), enjoying lunch and information exchange in San Francisco, 2003.

Here is the link to her obituary titled Pat Cody, Bookstore Owner, Pioneering Feminist Health Activist, which appeared in The Berkeley Daily Planet newspaper:
http://berkeleydailyplanet.com/issue/2010-09-28/article/36382?headline=Pat-Cody-Bookstore-Owner-Pioneering-Feminist-Health-Activist

Hoops and Hopes for a DES Apology

The following is a message from Caitlin McCarthy in USA:

I have just received the following email from Senator Brown's office (copying Senator Kerry's office):
"Hi Caitlin:
Unfortunately, and despite our offices many attempts to raise awareness of this issue, it does not appear that the US Government - including the FDA - will issue a formal apology at this time.
If you would like to continue to pursue this matter, we suggest you consider working with members of the Senate HELP Committee, which has jurisdiction over the FDA. The Senate HELP website can be found at http://help.senate.gov/
We wish we could have provided you with the resolution that you desire and wish you best of luck in your future efforts.
Thank you."

I would like to thank everyone who took the time to comment on my DES blog post, add the blog post links to their Facebook and Twitter pages, and spread the word about the DES apology attempt. I honestly did my best. Moving forward, I'm going to focus my attention on raising awareness about DES through my feature film screenplay WONDER DRUG.

I encourage anyone who wants to continue pursuing the DES apology to contact the Senate HELP Committee (see link above).

Thank you again for your help and support.

- Caitlin

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COMMENT:Hearty congratulations to Caitlin and all supporters -the seeds are now sown towards a DES Apology!

More news....Caitlin's nomination as Intelligent Optimist is online with Ode Magazine http://www.odemagazine.com/blogs/intelligent_optimists/22519/caitlin_mccarthy

"Huff" gets onto Apology

Wow!
The Huffington Post, ranked the most powerful blog in the world by The Observer, today is featuring a huge item by Diana Bianchini about the need for a DES apology from the US Government.

See it now - One of America's Deepest Darkest Family Secrets: The DES Drug Disaster at
http://www.huffingtonpost.com/diana-biachini/one-of-americas-deepest-d_b_740798.html

Please note the statement: "A U.S. apology would also raise global awareness about DES."

Now we urge you to post comments under the DES article to let everyone know about the DES problems in Australia! Here is a chance to "let fly"!!

If you haven't already written to the US Senators to help make the Apology happen, their addresses are at previous blog "US Push for DES Apology".