My partner died of an internal SCC in their early 40s during the COVID-19 pandemic lockdowns, over a course of 9 months.
After the tumor board of the only cancer treatment center both covered by our insurance and willing to take us on refused to pursue anything but standard ovarian chemotherapy (which didn't work at all on ovarian SCC, which we already knew). Because of travel restrictions and the total lack of vaccines at the time, we couldn't travel to seek more aggressive treatment, so we pursued clinical trials.
My partner qualified for a trial only after chemotherapy started doing nerve damage, and was approved only after being judged too ill by the oncologist to take the drugs when they finally arrived. The courier showed up with $20,000 of useless drugs two days before hospice started. After my partner's death, I was told to dump them, unopened, after begging the oncologist and company to find someone else who could use them.
Bess' advocacy for access to trials for terminal and near-terminal patients is invaluable. If there's anything people can try to do, it's to help in this effort long before you or a loved one become too sick to benefit from it.
Jake has a hard road ahead, and so does Bess. All we can do is push to make sure nobody else has to fight as hard for, or be outright refused, the ability to fight for even potentially effective treatment.
Jake's wife here - I'm so sorry for the loss of your partner and the incredible frustrations of dealing with a system that requires so much self-advocacy, and even then, falls so short. I plan to continue advocating for patients as much as possible so that they don't suffer the way your partner and Jake have had to while trying to stay alive, as if it isn't already stressful enough. If you'd like to reach out, I'll eventually be trying to present patient stories and push for change directly at ASCO and other oncology conferences and I'd love to include your story in that push. Feel free to reach out anytime (DrBStillman@gmail.com)
After the tumor board of the only cancer treatment center both covered by our insurance and willing to take us on refused to pursue anything but standard ovarian chemotherapy (which didn't work at all on ovarian SCC, which we already knew). Because of travel restrictions and the total lack of vaccines at the time, we couldn't travel to seek more aggressive treatment, so we pursued clinical trials.
My partner qualified for a trial only after chemotherapy started doing nerve damage, and was approved only after being judged too ill by the oncologist to take the drugs when they finally arrived. The courier showed up with $20,000 of useless drugs two days before hospice started. After my partner's death, I was told to dump them, unopened, after begging the oncologist and company to find someone else who could use them.
Bess' advocacy for access to trials for terminal and near-terminal patients is invaluable. If there's anything people can try to do, it's to help in this effort long before you or a loved one become too sick to benefit from it.
Jake has a hard road ahead, and so does Bess. All we can do is push to make sure nobody else has to fight as hard for, or be outright refused, the ability to fight for even potentially effective treatment.