Makes me see red
I read, today, an intersting article on the ABC website about some of the issues faced by rural and regional people who have breast cancer or are at high risk of developing it. I'm not as remote as the woman who was featured, but even here there are struggles. One of the biggest issues is affordable specialist care. There are few, if any, public services and you do not always get informed about them. You get referred to the company that covers your region even if there are more affordable services within reach. I've spent ten years fighting this fight, and I know what the facts are. ABC interviewed an oncologist who agreed that, yes, there are unique challenges that lead to poor outcomes for county folk. Distance is one thing, cost is another. If you are on a pension or low income and have to fork out specialist fees that are well above the metropolitan rates it makes a shitty situation even worse. It is a pity ABC did not ask that individual what they, and their business, was doing to address equity of access for rural and regional people. I really do wish they had asked that. I wonder what the answer would be? Last time I asked a member of that business that exact question, in a public forum, the response was 'Be careful what you wish for, you wouldn't want to be waiting in clinics like the big public hospitals.' Really. Most of us have either money or time. You should not have to go into debt to fund services that are bulk billed elsewhere. This shit infuriates me.
Immunotherapy Atezolizumab (Tecentriq) Metastatic Triple Negative Experience
I just wanted to share my experiences with accessing the immunotherapy drug Atezolizumab (Tecentriq) that is currently not on the PBS (but hopefully will be soon!). In 2017 I was treated for TNBC stage 3 breast and lymph nodes, had 3 amazing years of good health, family and travel, then in March 2020 found an enlarged lymph node in my neck, same side as the BC. It took several ultrasounds (originally diagnosed as a vein) and then a biopsy to find out if was a small 1cm met tumor. I was referred to a trial at Peter Mac, but after testing (PDL1 Positive) found out the tumor was too small to qualify. Then referred to a different hospital for the same trial, waited 4 week for the tumor to grow only to find out the same thing, however was given the option of self funding through the private system. I had at each hospital ask about this, and somewhat annoyed that I was given a rough cost per treatment, not the compassionate deal that the pharmaceutical company was providing - $25K for 5 treatments, then no cost thereafter provide there is a response to treatment. Referred back to my original oncologist who completed all the paper work to the pharmaceutical company (Roche) and my private health insurance, who would be covering my private hospital day stay costs. I was waiting anxiously for my first treatment bill from Roche when my Oncologist called me to say my Private Health Insurance had agreed to pay the full costs (except the hospital excess) of the Tecentriq drug! Needless to say I was overwhelmed by both my private health insurance and my oncologist who completed all the paperwork. I've now had my first full round of treatment (3 weeks on, 1 week off) and can already feel changes in my neck. I don't know how long I will be on the drugs for, or how my body will react, but think it is important for others who may be in the same situation to know that if a drug is not yet available on the PBS, there still maybe ways of accessing it. Just as a side note, the trial I was referred to was stopped as it was using Tecentriq with Taxol and did not show any benefits to Taxol on its own. The previous trial to this for Tecentriq was with Abraxane which had shown a benefit - this is the combination I am on.