Barry’s Story
The unaffordable Lifeline – Immunotherapy’s devastating price tag.
We are casting our bread on the water... Our problem seems bigger than this tree which our Dad, is standing in front of... but we also know that nothing is impossible. We have faith that we will beat this.
Some background.
Our dad was diagnosed with Epithelioid Inflammatory Myofibroblastic Sarcoma (EIMS) a very rare, aggressive tumor in July 2024. Only 55 reported cases worldwide. The tumor (15 x 10 x 10 cm) was removed, and 6 weeks post operation a CT scan indicated regrowth on the same spot.
The approach to management of this very rare condition is not clear and there are no consensus guidelines.
The use of chemotherapy, used in the absence of alternatives, has yielded mixed to poor results. Chemotherapy is not the standard of care for EIMS.
ALK inhibitors are the most effective targeted therapies for ALK positive tumors. However, this tumor was ALK negative. So, targeted therapy was ruled out, making immunotherapy the next clinically appropriate step based on his high PDL-1 expression. His PDL-1 count was a remarkable 100%!
Unfortunately, Immunotherapy is super expensive, at R82 000 per drip and a patient requires x 18 drips. Also, unfortunately medical aid companies do not pay for this, although we are trying very hard to at least get co-payments. Unsuccessful so far.
Large phase 3 trials are not possible because there simply are not enough people to take part in such a study. If you insist on large trials it would mean that any rare disease will always leave any beneficiary of a medical scheme without cover.
To exclude a patient with such a rare disease, from lifesaving medicine feels wrong, but that is just how the broken system works currently.
We did a fundraising campaign and managed to secure 4 x drips for our Dad and got remarkable results.
Nothing beats the fact that the sarcoma decreased with 26%! The treatment is WORKING!
We are trying to keep our dad on the drips. Please support our journey if possible and also please continue to pray for us and share our campaign with people you think will be able to assist. The next dates that we are trying to reach is 12 March and 2 April. (Every 21 days). After that we will reassess his condition with more scans.
Thanks so much,
The Fourie Family
