This story is about a local woman, Theresa Zame and her journey of building awareness around the Therapeutic Products Bill, which is currently being reviewed in parliament.
Theresa has stage four lung cancer. She was told that her cancer is terminal, and was given 9 months to live when she received her diagnosis. ? months have passed since that prognosis due to the medication she is taking.
This medication is called Tagrix, suggested to her by her oncologist as my first line of medication. It is imported via a humanitarian business - Hope Pharma Connections Ltd. Her oncologist writes a prescription, and Hope Pharma Connections sends that prescription to a reputable pharmacy – Beacon Pharmaceuticals Limited, which then mails the medication to Theresa. Hope Pharma Connections has helped hundreds of vulnerable people since establishing its distribution network in NZ in July 2020.
Tagrix is produced by Beacon Pharmaceuticals Ltd is a Bangladeshi pharmaceutical company that develops generic versions of medications. They manufacture more than 200 generic drugs and 65 oncology medications, which cost 8 - 10% of the originator’s brand.
As of her last CT in February, Theresa discovered that the cancer mets she had in her bones and liver were gone, the tumour in her left lung had shrunk and the cancer throughout her lungs had significantly thinned - the cancer is now localised in her lungs. Her CT showed that there had been no progression, that the Tagrix is working effectively - delaying the onset of the cancer, relieving her symptoms and preventing complications.
This medication, her lifeline, the thing that has given her a better quality of life and extra time would no longer be available to Theresa if the Therapeutic Products Bill is passed in its current form by parliament.
There is an FDA approved medication called Tagrisso, but Theresa would only qualify and be prescribed it would be if her lung cancer had metastasised and reached her brain - an ambulance at the bottom of the cliff type of approach, which Theresa says desperately needs to be reassessed. This FDA approved medication costs $10,000 a month compared to the $1000 a month that the generic medication that Theresa currently accesses. Tagrisso is funded in the bulk of OECD countries including Australia but not here in New Zealand.
Under the new bill Theresa would no longer be able to receive Tagrix by mail as it is an unfunded medicine. The only way she would be able to access Tagrix would be by travelling to Bangladesh and purchasing it herself. Nor would she be able to raise money to purchase Tagrix via a Givealittle page or have open conversations around funded medicines, as talking about it publicly is deemed to be communication under the advertisement clause of the new bill.
There are a huge number of concerns about this Therapeutics Bill currently under Review in Parliament. Many come from Rongoā practitioners, importers and users of natural therapies around the country. Theresa’s concern is around the consultation process for the bill, which opened and closed before most New Zealanders were even aware of it and implications that it will have on our ability to care for our own health if it passes.
“Having a terminal illness is confronting and it makes you feel vulnerable as you become acutely aware that you’re not going to live as long as you had thought you would.
“It can also make you strong and want to fight for your life” says Theresa.
Theresa has started a petition to parliament that is open for signatures until May 26 2023. The petition asks that the House of Representatives amend the Therapeutic Products Bill to enable patients to import prescription meds, reflect how clinical trials operate through SCOTT Committee, change the definition of “advertisement” so it does not risk criminalising patients, advocates & media, and incorporate s 29 of the Medicines Act 1981. You can find it here: tinyurl.com/3svc6amr
Theresa has also organised a couple of events, one in Gisborne and another in Wellington to create awareness around these issues with the Bill as it stands. You can find the event details here: https://fb.me/e/314JtaZxH
We encourage you to do your own research, and if you are concerned, use your voice!