Betsy Neiser was being treated for advanced ovarian cancer with Doxil, a tumour-shrinking drug she thought she could take indefinitely – but then her doctor told her they had run out
Since Betsy Neiser, a lawyer and mother of two from Leverett, Massachusetts, was first diagnosed with advanced ovarian cancer in July 2002, she has had three recurrences, each successfully treated with chemotherapy.
After the last recurrence, in the summer of 2009, her cancer began to grow again, so she was put on Doxil, a mainstay chemo drug for recurrent ovarian cancer. Her tumour shrunk, the tumour markers reduced, her side effects were few and the expectation was that she could take it indefinitely.
But last July, when she went to hospital for her monthly infusion, the doctor had bad news. There were 12 patients waiting to be treated with Doxil, she was the second on the list and he only had one.
“I was scared. It’s comforting to know that I will get a drug on time when it will be most effective. When you don’t get it as part of a regular schedule the cancer starts growing.”
At first, she was told that there would be a three-week wait. Then, with no end to the Doxil shortage in sight, doctors put her on Adriamycin, a substitute. Neiser, 58, whose illness caused her to give up law and become a director of a community cancer support centre, said the effects were marked.
“I lost my hair for the third time. I became very nauseous for seven weeks. My fatigue levels were such that I could not go to work for long periods. I went on vacation to Michigan and slept for 18 hours a day.”
Worst of all, it affected her identity.
“When you have a metastatic cancer like ovarian cancer and you know you can never be cured, your quality of life becomes very important. When you are sick you feel defined by your illness. I define myself by how productive I am.”
Neiser found the experience so disturbing that she launched a grassroots campaign to tackle the drug shortage crisis.
She said: “I can’t complain. There are so many people who are so much more sick. I feel terrible for them, especially the children whose leukaemia is treatable with methotrexate.
“My doctors told me I would probably get more Doxil because of the patients who had died because they couldn’t get Doxil.”
The shortage was caused by Ben Venue Laboratories temporarily stopping production of the drug due to contamination issues and then choosing to halt production altogether.
Neiser said: “I’m thrilled the FDA have found more stores of Doxil, but it is temporary and we have been burned before. I’m disappointed that the distributor, Johnson & Johnson, only relied on one manufacture of the drug. A single manufacturer increased exponentially the risk of a shortage. They should have known that was an issue.
“There needs to be an improvement in the manufacture and distribution standards of drugs that cure a disease and prolong life. There’s a responsibility on the shoulders of regulators but also on the industry itself.”