RIP TIFFANY. QUITE SIMPLY: UNACCEPTABLE

Last week, in the commotion leading up to Christmas, my mom stunned me with bad news.  A young woman named Tiffany Costa died.  She was diagnosed with breast cancer in 2002.  At 29 years old.  Stage II.  She died two weeks ago.  She was metastatic for many years.

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.

Those are things that require research.  And more research.  And we have too far to go.

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.

And NPR:  How A Drug Shortage Hiked Relapse Risks For Lymphoma Patients

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:

hey guys!

so im in a bit of a situation if you havent heard...theres a national shortage of my chemo, DOXIL. its the ONLY drug thats worked for me and im feeling great & doing so well and i want to keep it that way!!!
i found a way this time to buy 9 viles internationally, but obviously insurance doesnt cover anything not made here. 

BASTARDS.

9 viles =3 treatments for me.

there was a priority list the first time this briefly happened which i was on and it allotted me 7 treatments. ive used them all.

there is a new waiting list but only the people that didnt get on the first one can be on it so that excludes me :(
so, im trying to raise money because its VERY expensive and no one knows when the shortage will be over...days, months, years, never...its unknown.

some my friends have created a fundraising site for me so what im asking is if you all could PREEEETTTTY PLEASE donate if you are able to, then pass the link and info on to your mother father sister brother cousin aunt uncle boyfriend girlfriend in-laws neighbor friend niece nephew co-workers...EVERYONE. id be forever grateful!!

ANY AMOUNT WOULD BE AMAZING!

thanks!

if youre TWEETING im @tiffercosta

PLEASE VISIT, DONATE and PASS IT ALONG!!

XOXO
tiff

I have no ax to grind against Big Pharma.  I understand they are not in the business of philanthropy.  They operate for profit and their profits on their drug patents among other things, are funneled back into research and development.  Yes, people are getting rich and flying in private jets and doing all of that stuff..... That is capitalism and I'm not going to get into a moral, ethical discussion except to ask Big Pharma some relatively simple questions.  Maybe I'm being idealistic and if so, I'm all ears but come to me with solutions.  Suggestions.  I need to understand.  I'd like answers.

If you have the ability to manufacture a drug that is saving lives, can't you divert at least SOME of your resources to see that these shortages are addressed?  Can you guys find a way to work together and address at very least the most critical shortages?  You want to create a feeling of good will?  THIS is your chance.

Because what is happening at this present time?  Quite Simply:  UNACCEPTABLE.