In 1985, Beverly Zakarian was a wife, a mother to a 15-year old girl, and a newly diagnosed patient with Stage 3 ovarian cancer. She lost her uterus to surgery and her hair to chemotherapy, but she found her passion for patient empowerment.
Zakarian learned the hard way a lesson that has now become a touchstone in most successful cancer treatments – that patients must take an active role in their cancer care. Her experience with the “don’t ask, don’t tell” medical establishment, confusing federal bureaucracies and unresponsive insurance companies, led her to found the Cancer Patients Action Alliance.
Instead of being a care-based patient group - providing access to services, emotional support and other important but reactive resources - Zakarian and CAN-ACT advocated direct patient action via a political, social and personal agenda.
Her book, published one year before her death in 1997, still speaks with the fire of an evangelist's belief in the transformative power of information.
Zakarian’s most enduring vision – and what keeps this book relevant today - is that life and death decisions belong to the community most impacted by the disease. And by organizing, cancer patients can be a voice not only in the conversation but in their outcome.
It's a vision for the eye cancer (aka choroidal melanoma, eye melanoma, uveal melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) community. The majority of the eye cancer medical establishment, incuding all five of the doctor-founded eye cancer nonprofits, continues to fund treatment research of a disease which has not seen a change in the incidence or mortality rates in the past 25 years.
Extensive and expensive treatment research has not resulted in a change in eye cancer survival rates. Clearly, a radically different approach is needed that involves multidisciplinary participation, including that of a patient advocacy group.
In the meantime, you can honor Beverly Zakarian's message and memory by becoming an "activist cancer patient." Request copies of your medical records, understand your disease, and share your eye cancer story (see the Eye Cancer News - People links on this site).
It’s your sight.
It’s your life.
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