is often having the people who love you fight for you.
First I just want to say thank you. Thank you, thank you, thank you. I’ve never felt so grateful and, frankly, just blown away by the number of people who are fighting for me in so many ways. I can’t help but feel that all the joy and wonder and gratitude that you have inspired in me is helping to shrink this damned tumour.
Thank you to my step-daughter for organizing a Go Fund Me. Thank you to so many friends and colleagues who have written their MPPs (Members of Provincial Parliament) to express concern about Ontario Health’s refusal to fund my zenocutuzumab treatment. Thank you to the MPPs who have reached out to me to learn more and offer to help. Thank you to all my friends, and the friends of my husband, and the friends of my sister, and the friends of my step-daughter, and to the people I don’t even know for donating to help fund my treatment. Thank you to the heavens and the gods that I have such capable, savvy, determined, and strategic people in my life who know how to do things like organize an email campaign and a Go Fund Me initiative. And thank you to my husband for being the brilliant and loving pitbull he is — once he sinks his teeth into something, he does not let go.
In the cholangiocarcinoma community, people regularly remind each other how important it is to advocate for yourself, no matter how difficult or scary. Often this means challenging doctors and, especially in the USA, insisting on second and third opinions. There are so many people in this community who managed to save their own lives by refusing to accept “you have a year to live” and finding specialists who had a different answer. This is probably true of all cancers, but maybe especially true of cholangiocarcinoma and other very rare cancers, where the first oncologist you encounter may know very little about the disease, treatment options, the importance of comprehensive genomic testing, etc.
In Canada, the ability to get a second or third opinion is much more limited. The community of cholangiocarcinoma oncologists and surgeons is so small, there’s just not a lot of doctors to consult if you are skeptical about the first answer you get. Canadian patients who want a second opinion, and can afford it, go to the USA. In some places in Canada there’s such a lack of medical expertise in cholangiocarcinoma that I met a patient who had been assigned an oncologist who specialized in brain cancer, and who encouraged this patient to seek advice in the USA and bring it back because she had very little knowledge to offer. OMG. (Well, I say OMG, but really I bet this kind of thing also happens in the USA and elsewhere, depending on where a patient lives. In fact, I know it does).
Self-advocacy in the USA also takes the form of fighting insurance companies. Drugs denied, surgeries denied, all despite patients’ oncologists stating and documenting that the drugs and surgery will be life-saving. It’s abhorrent. Read about Keaton Herzer to learn more, and watch his TikTok videos in which he spends hours on the phone trying to get his insurance company to cover life-saving treatment. That an unwell patient has to spend this much time and energy fighting intransigent, impossible-to-navigate, profit-making health bureaucracies is egregious. His is an inspiring story of success, but he would not have gotten the zenocutuzumab or the liver transplant or achieved NED if he hadn’t fought like hell.
In my case, it’s a struggle with a government bureaucracy that has denied coverage of my treatment twice. And, infuriatingly, it’s about getting the bureaucracy to follow its own policy. And “self-advocacy” has really been about others fighting with and for me through emails, phone calls, and donations. And my oncologist has done his bit (though not without some prodding TBH because he is very uncomfortable acting as an advocate), and a lawyer has provided great advice regarding argumentation in the appeal. Please read this Go Fund Me to learn more, and please donate and share.
Thank you.
Leave a comment