Zejula was approved on March 28, 2017 by the FDA for ovarian cancer patients who have had at least one recurrence and are platinum resistant. Zejula is a PARP inhibitor, which means Poly(ADP-ribose) polymerase (PARP) inhibitors target DNA repair and are specifically active in cells that have impaired repair of DNA by the homologous recombination (HR) pathway.
One of the advantages of this particular drug is that it does not require prior genetic testing. A woman could benefit from this drug whether they have the BRCA mutated gene or not. With other PARP inhibitors genetic testing is required, and getting the results can be lengthy. With cancer patients time can be everything.
It was an honor to be invited to the Patient Leadership Council meeting in June of this year in Boston, MA. The meeting was initiated by the Tesaro Pharmaceutical Company, which hired the Snow Companies to arrange and lead the meeting. Invitations were sent out to about ten women survivors/advocates or caregivers, but unfortunately some of them were not able to attend. There were four of us survivors, but we were full of information and enthusiasm to contribute as best we could. It was in January 2017 that I received the invitation not knowing that I would be on the drug in June of this year. Serendipity? God at work? Yes to both.
Tesaro’s mission is to be more available to the social, economic, and medical needs of the ovarian cancer woman. Therefore, the purpose of this council is to help them achieve those goals. I will not be able to list all the things we talked about, but here are a few.
1.We discussed the need for Tesaro to be visible as a company that truly does care about the patient and be available to us. The general public has the image that pharmaceutical companies CEO’s sit in their skyscraper offices with no regard as to how the cost of producing drugs is passed on to the patient. Too many people are unable to pay for their prescriptions, or the insurance companies will not cover them. If Tesaro can change that image by reaching out and helping the patient that would go a long ways in improving how the public sees their company.
2.They wanted to hear from us advocates what programs we do, the successes, our use or not of social media, and how we reach out to the communities. We shared about our own journeys and what things, groups, brochures, etc. did and did not help; what resources did we seek out; how was communication with our physicians and nurses; what brochures, books, videos or articles were helpful? We spoke about various national and local organizations and how they have helped.
3. We also talked about the need to reach out to those in remote areas where there are not any oncologists nor gynecologic oncologists within their areas.
4. The communication that occurs between a physician and a patient is a critical part of the treatment of ovarian cancer. It was interesting statistics how physicians perceived that they explained very well any treatment or medication. Yet, only a third of the patients agreed. It was strongly suggested that the woman needs to go to her appointment with a list of questions and seek answers that are clearly understood. This is particularly important during the early stages of treatment when emotions can interfere with communication.
Here is a graph that shows the effectiveness of Zejula from the clinical trials:
I came away from the meeting inspired to do more. Yet, I need your help. I cannot do it alone. It is so important for me to hear from you, and if possible, to offer your help in some way. There are too many of us women who live in fear, feel alone, and are dealing with insurance companies, seeking financial resources, need of caregivers, and support from family and friends.
Therefore, I now call upon each of you to share your suggestions, thoughts, concerns, questions, and comments about your experience as an ovarian cancer survivor. What are your unmet needs? How well does your physician communicate with you about tests, medications, treatments, or surgeries? Is their enough information available to you about resources in your area?
Your input will be valuable. You are important and your voice needs to be heard. Please write to me at firstname.lastname@example.org and give me your feedback. I will pass on any information anonymously. I will do my best to answer your questions and meet your needs. I will continue to communicate with you via my blog at www.outshineovariancancer.blogspot.com or the various ovarian cancer sites on Facebook.
Thank you for reading this and I hope to hear from you.