Shortages, Ethics and the Scramble to Stay Alive

There is a nationwide shortage of Doxil, a chemotherapy drug used to treat recurrent ovarian cancer among other cancers. My oncologist told me two days ago when he said that I would need to start Doxil in combination with carboplatin to treat my now recurrent cancer.  New supplies are not expected until mid or late August.  The drug is distributed by Johnson & Johnson and manufactured by Ben Venue Laboratories in Bedford, Ohio, a unit of Boehringer Ingelheim GmbH of Germany. A representative of the manufacturer explained that the company is facing "manufacturing capacity constraints" that have held up some products, and it is working diligently to prioritize and expedite manufacturing for current orders." (WSJ 7/21/11)  The devil in me wonders if it is the priorities are set by the lower financial return Doxil brings or the fact that it is a woman's disease that Doxil mostly treats.

However, I also am grappling with an ethics issue.  I have joined an ovarian cancer forum on the internet where it came to my attention in one discussion that women from around the country are scrambling to get to places remote from their regular treatment centers to get the precious Doxil before it runs out.  One woman said a small supply was available in Texas; another thought some could be had in Boston.  I must say that such behavior makes me very uncomfortable.  Why should a scarce product be given to someone who shows up on a doorstep wanting it?  One of the women insisted that she was doing well and needed to finish 6 cycles even though my own oncologist said that six cycles may not be necessary for everyone (particularly someone who is "doing well").

I suppose the "battle" against cancer is like every other battle-- get in there and slug it out to get what you need and want.  I have a lot of fight in me but I find it unlikely that at this point I would fly 2000 miles to get a treatment that may not give you much more of an edge anyway.  But maybe I am still too new to this chronic cancer treatment situation.  The odds are that the rest of my life, whether it is a few years or many more, I will be going regularly for treatment.  I wonder if the more you go through treatment, the more you are desperate to make sure you get it.  If you don't, maybe the next recurrence will be your last because the cancer will have spread too far.

Is there a principled way to decide who gets the limited supplies of this cancer drug other than the slugfest for the last drops? All of us burdened with ovarian cancer need treatment to stay alive.   Is it anymore principled for me to have access to top rate health care because I have excellent health insurance whereas someone else will not get the needed drug or treatment because insurance will not pay and it is otherwise unaffordable?  Perhaps it is my diminished IQ due to learning of the recurrence of cancer, but I do not have any answers.  I just know that it makes me uncomfortable.

It's Not Fair . . .

You may have noticed a bit more cynicism and negativity from me in recent posts.  Trying to get my mind around my recent diagnosis of ovarian cancer and the upcoming "rough" course of chemotherapy has made me a bit cranky.  I did not much feel like celebrating the new year given that I have five to six months of discomfort ahead of me in 2010.

At this time I am less concerned about or focussed on surviving than I am on how bad the side effects of the chemo will be.  My prognosis is good if I make it through the chemo--a protocol that includes Taxol via IV and cis-platinum delivered intraperitoneal (IP) which means that they inject it into my abdominal cavity through a port that my onc-gyn installed during my surgery last week.  The protocol consists of six 21 day cycles of chemo delivery.   I get the chemo over the course of 3 full days  (i.e 8 hours each day of infusion) on Days 1, 2 and 8 and I need to be hydrated for 4 hours/ day on Days 3, 4 and 5 in   each 21 day cycle.  That's a lot of time being hooked up to an IV or IP.  I am not sure how I will spend the rest of the time because I do not know how debilitating the side effects will be.  I am assured of having fatigue, hair loss and anorexia.  I probably will have some abdominal bloating and digestive problems as well as nausea for which I will be given medication to ease the severity.

I am trying to prepare for the hair loss which is probably the only side effect for which I can plan.  I am cutting my hair very short rather than shaving it because I need to ease into its loss.  Even though I wear my hair relatively short, I am very fond of it. I have also been lucky to have thick eyebrows and eyelashes all my life so I am dreading their loss.  I expect my hair will grow back in gray rather than the blonde streaks I have sported for so many years.  It will be another "scarlet letter" for me, announcing to the world that I have cancer.  My son has, however, come up with an idea for a slogan for me to go on a hat or t-shirt (preferably in teal, the apparent marketing color for ovarian cancer).  "It's not fair.  Not my hair!"  I love this slogan!

I am working up the strength for this ordeal but reserve the right to be crabby and negative.  I hope you all understand and accept that I am the one making this journey and will do whatever I need to do to get through it.  Please bear with me.