Tiffany's extended family members are dear friends of my mom. I came to "meet" Tiffany because of an email mom forwarded to me. She was being treated with Doxil. There was (and it would appear there still IS) a shortage of Doxil and she was trying to raise money to have the drugs brought into this country from Europe. The cost was exorbitant. I remember reading the email and I recall thinking that it was disgraceful. A drug that was keeping Tiffany alive was being rationed out. Gasoline, I get. Life saving medications in an environment where, "If it works, keep doing things exactly the same....With No Deviation--NOT in the amount and NOT in the schedule," quite simply: UNACCEPTABLE.
When my mom told me Tiffany died, I immediately remembered her problem getting medication. I went on my bully pulpit warpath. "Did something happen with the drug supply?" Mom knew I was ready to (her words to Tiffany's aunt when she asked) "Storm Washington DC or something, she's PISSED." As it turns out, she never had a lapse in treatment. Hers was another case of metastatic disease that stopped responding to the present treatment and there were no more tools in the drug tool box. End of the line. To reiterate. Quite simply: UNACCEPTABLE.
Tiffany and I communicated via email and on social media. She was filled with life, she was irreverent, she was fine and then, at the end of August, she disappeared from twitter. It fits with the timeline I was given by my mom. I am deeply saddened by her death. It reminds me of much.
- We must find treatments for the metastatic patients and they MUST be treatments that do not mess the quality of their lives and the MUST buy them years and years..... so that their deaths are of anything... just NOT breast cancer or the ensuing fallout from the toxic treatment.
- We must find treatments for those of us who've already been diagnosed and living in the land of NED (no evidence of disease). How can we make NED a permanent place in which to reside?
- We MUST find ways to prevent those who have never had breast cancer from ever getting the disease in the first place. I have read some of the grumblings of those who call Deadline 2020 a pipe dream and I respectfully DISAGREE.
Then, we have the practical things. Things that are solvable problems. This relates to that aforementioned drug shortage. It's headlines again and it's quite disheartening. I blogged about this in August of 2011. I was new at this blogging gig and I was a total ignoramus where twitter was concerned. No Joking Matter, Chemo Drugs Are in Short Supply? was my entry on August 19. Then, on November 16 (last year), I was OUTRAGED about some of the wording used to explain the reasons behind this ongoing Drug Shortage.
Today, my blood is boiling. We've watched in horror as the angelic faces of twenty young children flashed on our television screens. We should be equally horrified by what I read in the New England Journal of Medicine and in an NPR story about the treatment of CURABLE childhood cancers; specifically, lymphoma.
The NEJM article is titled The Impact of Drug Shortages of Children With Cancer and in part, it says:
Almost 80% of children and adolescents with cancer can be cured with current therapy. Most of the curative treatment regimens are based on chemotherapeutic agents that have been available for decades, but some of these have recently been in short supply. These shortages are likely to have devastating effects on patients with cancer and must be prevented. For many of these agents, no adequate substitute drugs are available. Our results suggest that even promising substitute regimens should be examined carefully before adoption; what might appear to be a suitable alternative regimen may result in an inferior outcome — an intolerable situation for young people with curable diseases.
Quite simply: UNACCEPTABLE.
Back to Tiffany.... In February of 2012, she sent this email to her family, who sent it to my mom, who sent it to me and I took it to social media.
We can't have children being "sacrificed" because of anyone's bottom line and we should NEVER receive emails like this.... not about adults and not about children: