[Reblogged from here.]
Dana Farber’s Dr. Winer gave an eloquent and ultimately deeply personal overview of the shifting landscape of breast cancer treatment over the past 25 years at the 2016 San Antonio Breast Cancer Symposium (SABCS). Dr. Winer’s presentation, “The Long and Winding Road: Glancing Back But Moving Forward,” was this year’s William L. McGuire Memorial Lecture.
Dr. Winer received a standing ovation.This lecture was remarkable on many levels. Some people in the audience were moved to tears–including both MBCN President Shirley Mertz and me.
For those who might not know, Charles A. Coltman, Jr., MD and William L. McGuire, MD, first conducted what evolved into SABCS in 1977. McGuire died in 1999.
Dr. Winer recalled the early days of SABCS which had about 150 attendees vs. the current event which draws upwards of 7,000 clinicians from around the world, 150 journalists, hundreds of companies allied to the field and many patient advocates like Shirley and me.
Dr. Winer said that in 1999, breast cancer was essentially classified by stage–subtypes as we know them today (ER/PR+ HER2- etc.) had yet to be identified. People were generally offered extensive surgery. Treatments were even more limited int the metastatic setting–it was the era of bone marrow transplants and attendant severe toxicities. Patients were scared and often stigmatized because of their disease. Advocacy was in its infancy.
Over the past 25 years, surgeons are doing less. Late radiation toxicity has been reduced. Treatments for HER2 positive disease have been a game-changer. Most importantly, we now know breast cancer is a family of diseases–many different subtypes have been identified.
Dr. Winer identified three key challenges:
- Therapeutic resistance
- Over treatment and
- Health equities.
Dr. Winer characterized the latter as a “major problem worldwide; the cause of countless unnecessary deaths.” Race, poverty, limited education, lack of insurance and less than optimum care all contribute to dismal outcomes. There are also age-related disparities…those under 30 and over 80 generally do worse, with people age 80 or older accounting for the highest breast cancer mortality.
After thanking all of his Dana Farber colleagues, Dr. Winer then shared his own story. He noted that he will be 60 years old tomorrow and until now, he had never spoken about having hemophilia.
As a child he was frequently hospitalized and, following the wisdom of the day, forced to eat a daily helping of peanut butter which was then thought to help blood coagulation. Dr. Winer froze the peanut butter to mask its taste. His arm was frequently bandaged and he was often asked if had broken it.
At the time, someone born with hemophilia could expect to live to age 20.
But when Dr. Winer turned 13, factor products revolutionized hemophilia care because they could be stored at home, making treatment easily accessible. People with hemophilia could now self-infuse factor products, drastically reducing the need for hospital visits. Work, travel, and other activities were now carried out with greater ease. “I became a normal teen,” Dr. Winer recalled.
Inspired by one of the most famous people with hemophilia in history, Tsarevich Alexei, son of Nicholas, the Tsar of Russia , Dr. Winer studied Russian history and learned the language.
In 1979, he started medical school. “You’re fine,” a fellow med student told him in 1980.
In 1983, there were three known cases of AIDS in hemophiliacs. Dr. Winer recalled thinking, “Damn, we’re all infected.” From the late 1970s to the mid-1980s, about half of all people with hemophilia became infected with HIV after using contaminated blood products. An estimated 90% of those with severe hemophilia were infected with HIV.
Dr. Winer shared his HIV odyssey as it played out against personal milestones. In 1985 and 1986, he and his wife, Nancy, had their first two children, both boys. Their daughter was born in 1989, the same year he began experiencing night sweats and other symptoms.
“My dentist fired me,” Dr. Winer recalled. “I worried I wouldn’t be able to work. I worried my kids would be ostracized.”
Unlike Magic Johnson who could afford to retire, Dr. Winer needed and wanted to continue to work and he did, albeit with the challenge of ongoing treatments and all of the uncertainties that accompanied them. His disease included what Dr. Winer called “a few more hurdles.”
The hepatitis C virus (HCV) infection was also transmitted through contaminated factor products, pooled from the blood of hundreds of thousands of donors. Dr. Winer continued to work during his Hep C treatment. “What’s wrong with him?” was a frequent question during that time. In 2003, he dealt with portal hypertension and he needed a vascular shunt in 2008.
“For the past eight years, all has been well,” he reported.
From his own experience, Dr. Winer learned that having a serious medical condition:
- Doesn’t always reset priorities.
- Doesn’t impart a universal understanding of every other patient/disease.
- Doesn’t make you a better person.
“Everyone has something,” Dr. Winer said. “Few people live [in a perfect world] with neat white houses surrounded by picket fences.”
He went on to offer attendees six takeaways:
- Coping matters–doctors need to help patients cope.
- People are more than their illnesses.
- Stigma based on illness is devastating.
- There are silver linings in all experiences.
- We need to carefully consider treatment toxicities.
- There is always hope as science marches forward.
Dr. Winer thanked his wife, his children and their significant others and the thousands of people he has cared for. “We are given this door to walk into people’s lives,” he said.
When pondering why he is still alive, Dr. Winer credited ongoing scientific advances and access to care. He also credited his parents, Rhoda and Richard Winer. “They told me some people are born with blue eyes, some with brown eyes and some with hemophilia, so get on with your life.”
I will never again eat a peanut butter sandwich without thinking of Dr. Eric P. Winer.
I can’t express how much this lecture inspired and moved me. I wish Dr. Winer a very happy 60th birthday and thank him for sharing his amazing gifts with all of us and showing us how to get on with life.