CLL Advocates is one of the 17 patient groups that has created the Forbidden Pharmacy. In view of the significant increase in funded drugs that CLL obtained earlier this year, a decision was made to join with the Waldenström group and to make the ‘hero’ drug Zanubrutinib, a second generation BTKi and one that the CLL community needs for people with cardiac side effects who cannot tolerate ibrutinib, for example because of cardiac arrhythmias. It is a drug that is desperately need by the Waldenström community who have only basic chemotherapy even for relapsed disease and they kindly did the actual patient story, making a very strong case for the drug. Importantly, CLL Advocates contribution was funded out of the CLL Advocates Give-a-Little page with no pharmaceutical support.

The launch of the Forbidden Pharmacy was up in Auckland at the end of July. It was attended by politicians including the Minister of Health. Several of the CLL Advocate Trustees were present over the 2 days. The plan is to release the stories of the people unable to get the drugs they need over the next 2 months leading up to the election.