cancer treatment denied in B.C.

With the Annual Cancer Conference taking place in Vancouver my question is why a certain group of Her2 positive breast cancer patients aren't getting Herceptin.

They are being told it is because there is no clinical evidence showing that there would be any advantage to them receiving it,but, there is no clinical evidence showing that there wouldn't be any advantage to them either.

In fact these are a small group of women that are in a catch 22 situation because they are not being studied,so there will never be evidence for them receiving Herceptin one way or another.

This puts them in the ghastly position of waiting for a recurrence or metastasis with no adjuvant therapy available.

The other point I'm trying to make in my letter is that the Herceptin treatment that the Cancer Agency is approving is based on empathetic reasoning ( by extending treatment to 1 year post adjuvant therapy) instead of scientific reasoning (Herceptin used within 7 weeks of adjuvant therapy ). How can patients be denied treatment supposedly for scientific reasons when the cancer agency is not using scientific reasons to grant therapy???

An open letter to the Federal Health Minister and Provincial Health Ministers
Women diagnosed with Her2 Positive Breast Cancer
CANCER TREATMENT DENIED

The Lost Women of Herceptin

I would like to express how incredible the development of Herceptin has been and what an amazing contribution Genentech, Roche and all researchers involved have made in implementing Herceptin use as a drug to prevent recurrence in early stage Her 2 positive breast cancer patients.

Overexpression of the Her2 gene is a negative prognostic indicator which leads to an aggressive form of breast cancer effecting approximately 20-30 % of all newly diagnosed patients. Herceptin, a therapy developed to target Her2 overexpressed cancer, has shown efficacy for advanced breast cancer in past clinical trials. Earlier this year results from clinical trials addressing the effectiveness of adjuvant (treatment to prevent recurrence) Herceptin in combination with chemotherapy or after the completion of all other adjuvant therapy in early stage breast cancers have shown unexpectedly large positive results. The drug is well tolerated with few side effects, of concern is a risk of cardiotoxicity of up to 4 %, this can be managed with diligent monitoring. Evidence from these recent clinical trials has demonstrated an approximate 50% reduction of recurrence for those patients treated with Herceptin vs. those that did not receive Herceptin. This group of mostly young (pre-menopausal) women at a high risk of recurrence of breast cancer has been given the hope of a cure for their disease where there was no hope before.
Miraculous results, to say the least.
Unfortunately, with so much good news a small group of women have been overlooked in the medical and media excitement…. they have not been given an equal opportunity to benefit from Herceptin treatment. Although they are Her2 positive as well, and at high risk of recurrence, the BC Cancer Agency has chosen to deny them treatment. This decision is arbitrary rather than scientifically based. I consider these people The Lost Women of Herceptin.
As of July 2005, a provincially funded adjuvant Herceptin program began in this province. Patients that had completed chemotherapy after July 1st 2004 and met treatment criteria for Herceptin use were considered eligible. This allowed for up to a one year delay from the completion of chemotherapy in starting Herceptin treatment.
Although the scientific data only addressed Herceptin use within seven weeks of the completion of all other adjuvant treatments; for empathetic reasons the BC Cancer agency extended it's eligibility (read paid for by the province) for Herceptin to one year. This was an extremely generous move on the part of the BC Cancer Agency. However, in doing so an arbitrary line in the sand has been drawn for provincially funded Herceptin which excludes all Her2 positive women whom completed therapy before the date of July 1st 2004; The Lost Women of Herceptin.
This is a small group of women since testing breast cancers for her2 at the time of diagnosis was not mandated in the past and many of these women will have relapsed, approximately 33% within four years of diagnosis. The remaining patients in this small category are being denied treatment on the grounds that there is no evidence they will benefit from delayed Herceptin treatment, although conversely there is no evidence to show they won't benefit. Although Herceptin has soundly proven its merit as a preventative of recurrence in early breast cancer and in delaying disease progression in metastatic disease, the effectiveness of delayed adjuvant Herceptin treatment will never be studied. One would think, common sense should dictate that in this grey area these high risk patients be given the same hope for a cure as the other patients have been given….thanks to Herceptin.
Researchers, clinicians, pharmacologists, cardiologists and oncologists are unable to deny the possibility of benefit, and indeed when consulted admit that if it were their wife, mother, sister or themselves in this position they would opt for treatment providing they were financially capable. This leaves The Lost Women of Herceptin in the position of trying to raise approximately $ 50,000 each, for Herceptin. On a purely financial level there will be less cost to the medical system if these patients are treated sooner rather than in a palliative situation, not to mention the emotional cost to patients and their families.
The cruelest cut of all is that the patients that cannot afford the Herceptin as a curative treatment have no choice but to wait for a recurrence and potential metastatic progression of their disease. Ironically, at that time they will receive fully funded Herceptin treatments, though at this point there is no chance of a cure.
I am hoping that good judgment and empathy prevails for these Lost Women. Time is of the essence. I implore the Patients themselves, their families and friends, their physicians and care givers to contact their local, provincial, and federal representatives and ask for fair treatment for them.

Sincerely, Elizabeth E. Kinar
ruher2positive@yahoo.ca