Bill was 65 years of age. He had lymphoma. He was treated with conventional R-CHOP but that did not work.
He received a stem cell transplant in a teaching hospital in Ontario. That did not work.
His Ontario doctor suggested a CAR-T procedure. This is not done in Ontario. So the oncologist filled out the forms for OHIP’s out of country office.
Once that was faxed to the OHIP office, there was radio silence.
So Bill’s family member started to call Cancer Care Ontario. However, no one answered the phone. So they guessed at names and entered the first 3 letters of various names in random order.
Eventually the family member got a response but from the wrong person. He was , however, kind enough to give the family member the right person’s extension.
This person was able to give the family member the number for OHIP’s out of country office. The family member being an effective advocate called that office and was persistent. She presented the case. She did a good job.
Bill got the funding for the CART-T procedure in the USA. This procedure is very expensive. The cost is about US$350,000. Bill had the CAR-T procedure. However, his lymphoma was not totally eliminated.
Now Bill is exploring clinical trials. This is an area of great uncertainty and will also require the assistance of a knowledgeable guide and patient advocate.
This is the real world of considerable challenges that the patient advocate has to be prepared to confront.
This is the work that we do at RCM Health Consultancy when we are advocating for our clients. That is why clients in need call RCM.
647 350 5500.
Raymond Rupert patient advocate and healthcare consultant.