The Premier Hereditary Breast Cancer Hotline in the World Needed Funding
A letter supporting the restoration of funding to a world-class hotline for women at genetic risk of cancer was easy to write. The letter became a much larger initiative to keep the charity going in which anyone can participate.
Outside Buckingham Palace (Source Wendy Watson)
How could there have been a lapse in funding? The last time I checked, the founder of the hotline and good friend, Mrs. Wendy Watson, had a letter from Princess Diana praising her work. I had seen a photo of Wendy in front of Buckingham Palace, all dolled up to become an MBE. Her daughter, the delightful Becky Helen Measures later said on a podcast that made her mom the Master of Everything.
I hurriedly dashed off this letter urging the restoration of the helpline’s funding, trying to recall the events of nearly a quarter of a century ago. Thankfully, a later fact-checking confirmed almost all of what I had written in the letter. The exception was that I actually met Mrs. Watson before our encounter in Heidelburg, Germany at the 11th Annual Conference of the International Psycho-Oncology Society in Marsars
JAMES C. COYNE, PH.D.
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August 2, 2023
RE: Mrs Wendy Watson and the Hereditary Breast Cancer Helpline
To whom it may concern:
I now have emeritus status at the University of Pennsylvania, but I was recruited in 1999 from the University of Michigan with one of my key roles being Co-Director of the Cancer Prevention and Control Program of the Abramson Comprehensive Cancer Center. I joined a sizeable group that had moved from Michigan to Penn after Dr. Frances Collins dissolved his familial cancer group to head the Human Genome Project at NIH. Dr. Barbara Weber had Mrs. Madelyn Abramson advocate for my immediate recruitment largely because of my role as a clinical health psychologist managing psychosocial issues in the families in the Michigan registry. Looking back from 2023, it is hard for someone who was not there to imagine our frustration in attempting to establish the legitimacy of otherwise healthy women seeking prophylactic surgery because of their familial risk. The US National Cancer Institute depended on breast cancer survivors to lobby Congress for increased appropriation beyond and they successfully opposed funding for genetic testing and counseling.
I met Mrs. Watson in Germany around 2002 and arranged for her to come to Philadelphia to address a mixed group of oncologists, nurses, and patients. Len and Madelyn Abramson had just had the cancer center renamed for them because of their generous donation of millions of dollars. Madelyn knew exactly what I was up to in inviting Mrs. Watson and in encouraging her to be her charming, but outlandish self. Madelyn was quite a disrupter herself, but very effective in marshalling whatever support she needed from celebrities.
Many in the exceptionally large audience were staid old men bench researchers, not clinicians. Jaws were dropping a few minutes into Mrs. Watson’s presentation, but clinicians quickly realized how solid her advice was and that she had worked closely with respected medical geneticist Professor Gareth Evans. Then came the disclosure of Mrs. Watson’s challenge to Myriad’s patent of BRCA1 and BRCA2 in Europe, which I believe was successful by the time of her visit. That was enough excitement for a single presentation, but then came a plant question to Mrs. Watson about her indecision about surgical reconstruction. She asked the audience what bra size would be best for her.
Unfortunately, it was still several years before funding for studying psychosocial aspects of genetic testing became available in the US. Activists had to circumvent the survivors' lobby at NCI and appeal directly to Congress for a novel funding arrangement through the Department of Defense. I took advantage of a leading advocate for women at familial risk of cancer, Sue Friedman who has a degree in veterinary medicine. The degree was totally irrelevant to her advocacy work, but nonetheless gave her the credentials to serve as Co-Principal Investigator on my DoD grants. It was another couple of years until Time Magazine made “previvor” one of the words of the year in a direct challenge to “survivor.”
Mrs. Watson remains one of a kind, and we could not have come up with an anyway close American equivalent, then or now. I am sure even Dr. Friedman would agree that Mrs. Watson was the pioneer and her visit to Penn was such an important catalyst for what was to come.
Mrs. Watson has my strongest endorsement for the restoration of funding for her vital work in the UK NHS.
Sincerely,
James C. Coyne, Ph.D.
Professor Emeritus of Psychology in Psychiatry
University of Pennsylvania.
Update
As detailed elsewhere, I have now accepted an unpaid position with the National Hereditary Breast Cancer Helpline with the Advisor Concerning Psychosocial Aspects of Genetic Testing and International Relations. I am now in regular contact with the extraordinary Mrs. Watson and her equally extraordinary daughter, Becky Helen Measures. On my 76th birthday on October 22, 2023, I will designate the charity on Facebook as the place to send donations. Please give and keep giving.
The vulnerability of this unique charity to being shut remains. That would be such a tragedy. The charity has much more ambitious plans to identify women with heritable risk with genetic testing and to counsel them about what they can do to manage that risk. Currently, 97% of women do not even know that they and their daughters and granddaughters share risk and could be saved from premature death with evidence-based interventions.
You can begin to help saving lives by contributing generously now. Depending on where you live, you might get a tax deduction.
