patient advocacy


Love And Rare Cancer: Widow Fights On For Eye Melanoma Research

Sara Selig and Gregg Stracks on the day they were engaged.

Sara Selig and Gregg Stracks on the day they were engaged. (Julie Harris)

Dr. Sara Selig’s living room is a tribute to the love of her life. Her wedding contract – a Jewish tradition – hangs in a frame over the mantle. Pictures of herself with her “beloved Gregg” rest on the table behind the couch, and were sewn into a quilt, handmade by a friend.

The love is still there, even though Gregg Stracks died 17 months ago. “Love and relationships don’t die when a person dies,” Sara says.

That’s why she keeps up her fight against the rare cancer that took his life: uveal melanoma, cancer of tissue in the eye.

Gregg’s diagnosis came seven years ago, shortly after the couple returned to the US from living in Kenya so Sara could finish her last year of medical school. After a run, Gregg noticed that the pavement looked wavy. When the same thing happened the next day, he went to an eye doctor and then a specialist.  Diagnosed with uveal melanoma, he quickly had surgery.

The ophthalmologists who treated it didn’t know the oncologists who treated it, or the researchers who studied it.

Sara was hopeful their cancer story was over; Gregg feared the worst. About a year later he was told the cancer had spread to his liver. Uveal melanoma will spread in roughly half of patients, and is nearly always fatal when it does. Gregg was given less than a year to live.

Sara had started her residency at Brigham And Women’s Hospital, specializing in internal medicine and global health; Gregg started a clinical trial – an early treatment that they hoped would give them more time together.

Gregg, an organizational psychologist who helped African patients cope with the emotional side of HIV and AIDS, wrapped up that work after his diagnosis, and – still feeling good – started a consulting business, so he could spend time closer to home.

His doctor told Sara and Gregg that research into uveal melanoma was lagging other cancers. The ophthalmologists who treated it didn’t know the oncologists who treated it, or the researchers who studied it, he said. So Sara began working with the Melanoma Research Foundation to organize meetings of doctors and researchers, and form Community United for Research and Education of Ocular Melanoma (CURE OM), which she now heads.

She’s since helped raise more than $1 million, most of it for research into uveal melanoma. Diagnosed in about 1,500-2,000 American patients per year,  it is mainly detected during routine eye exams when an otherwise flat mole at the back of the eye starts to thicken. Continue reading

What We Can All Learn From Michael Jackson’s Doctor

By Ken Farbstein
Guest blogger

Michael Jackson had what most of us think we want: Utterly personal attention from a dedicated doctor, on call all the time for him alone.

That doctor, Conrad Murray, is now on trial for manslaughter (see reports here and here) though no one thinks Michael’s death from an overdose of the anesthetic Propofol was deliberate. By all accounts, the treatment that Michael received was anything but normal or typical, but is there anything that typical patients can learn from what went wrong?

Hindsight is 20/20. Clearly, doctors shouldn’t administer Propofol on their own. This case is unique. But as a patient advocate, I try to learn from every medical error, and to extract useful guidance that patients can act on in the moment. The lessons of Michael’s death have little to do with Propofol. Much remains unclear about exactly what happened, but I see three key lessons:

•Don’t assume information about your medications has been communicated from one doctor to another.
•Keep an updated medication list.
•Get a family member or professional patient advocate to help oversee your care.

The story of Michael Jackson’s death is explored in my book, Getting Your Best Health Care:  Real-World Stories of Patient Empowerment, among case studies of other celebrities.  In particular, I examine more fully the role of his medical team. The conflicting accounts this week by the prosecutor, defense lawyer, and early witnesses make it hard to know the whole truth at this time, but useful lessons are already emerging.

‘For the doctor to proceed then without a professional assistant, a cogent patient, or a computer was like a groggy pilot flying at night with no co-pilot or flight instrument panel: flying blind.’


Poor communication among medical personnel

Michael’s primary care provider reportedly communicated some critical information poorly. When emergency medical technicians arrived to try to revive Michael, his primary care doctor did not inform them that he had given Propofol to Michael, according to the prosecutor.  That may have affected the way the EMTs tried to revive him.

Flumazenil was used to reverse the effects of benzodiazepines like the Lorazepam that Michael had been taking.  Miscommunication may have led the EMTs to administer the Flumazenil in a misdirected effort to counteract the effects of the Lorazepam.

The patient’s role Continue reading