21/05/2018
Five weeks ago, we celebrated the news that Pembrolizumab (Keytruda) was finally going to be PBS listed for relapsed/refractory Hodgkin lymphoma (HL). Yes!! High fives all round. Three weeks ago, on 1st May, it was officially placed on the PBS. This means that anyone with HL who has relapsed after an autologous stem cell transplant or is ineligible for a transplant can now access the drug doesn’t it? No, it doesn’t. Well, maybe it does. I don’t know. Three weeks after it was listed, I don’t know. You see, when this announcement was made, there was no mention of the conditions of the listing, one of which is that “the patient must not have received prior treatment with a programmed cell death-1 (PD-1 inhibitor) for this condition”.
You’ll have to stick with me here. This drug, which I’ll refer to as Pembro from now on, belongs to a class of drugs called PD-1 inhibitors. There’s another PD-1 inhibitor, which is made by a different drug company, and that is Nivolumab (which I’ll call Nivo from now on). So basically, that sentence means if you’ve had Pembro or Nivo before, whether it be on a clinical trial, via compassionate access, or even self-funded, YOU CAN’T GET PBS funded Pembro! So, just imagine you have HL and you relapsed a few months ago. Your haematologist recommends a PD-1 inhibitor but Pembro isn’t on the PBS yet, so you pay for a couple of cycles at $10,000 a pop while you wait for the listing and then finally it’s listed, but you’re not eligible because you PAID FOR a few cycles. What the? When this little issue was raised with the powers that be, APPARENTLY they said something along the lines of “oh no, that’s’ not what we meant, we didn’t’ mean to exclude people who’ve had these drugs before, we meant patients must not have had PBS funded Pembro before”. Buuuut it’s never been on the PBS before, so how can anybody have had PBS funded Pembro before?
Apparently, it was just a matter of changing that wording and everything would be OK, but THREE WEEKS later, we are still waiting for confirmation that this will happen and for it to actually happen. How hard can it be??
Meet Francine. Francine is a mother of two gorgeous boys and runs a small business with her husband. She was diagnosed with HL in 2013 and fell into the minority group in whom first line treatment does not work. Primary refractory HL. A nasty beast. She then underwent salvage chemotherapy and an autologous stem cell transplant in March 2014. This time, the treatment worked and she was in remission! Sadly, two and half years later, she relapsed. This meant more chemotherapy which made her so unwell that her haematologist stopped treatment half way through the second cycle. She was then able to access Brentuximab, which she responded to initially but then her disease started progressing again. It was midway through 2017, and she was running out of options. She needed a PD-1 inhibitor. Pembro wasn’t on the PBS. It was going to be one day, but when? “Soon” was what everyone kept saying. She couldn’t just wait an indefinite period of time. She was granted 12 cycles of Nivo which began in August 2017. After just two cycles, she felt the best she’d felt in four years and a scan after 6 cycles showed she was responding. Another scan after a further 6 cycles showed the tiniest amount of possible progression and she was denied further treatment with Nivo despite still feeling great and despite it being accepted that scans on these drugs can be misleading. That was in January this year.
Since then, she has tried to access other drugs and been denied. There is a drug combination that has shown good results but she could only get one of the drugs! Just as she was preparing to pay for the other drug, the news came that Pembro was finally going to be PBS listed. That plan was thrown out the window and she breathed a huge sigh of relief! Everything was going to be OK. She waited patiently for the listing and was even booked in for her first treatment on 4th May, only to be told on 2nd May, “sorry, you can’t actually have PBS funded Pembro because you’ve had NIvo before”. Seriously? What now? Back to the original plan of self-funding one of the drugs in the combination or self-fund Pembro? Oh no, wait, maybe you can actually have Pembro but you just have to wait until the wording is changed on the listing. Three weeks later her treatment plan is still in limbo because this simple change of wording hasn’t happened! Is it actually going to happen? Francine has not had any treatment since January so her lymphoma is clearly progressing. She can’t wait any longer. She needs to get a plan in place and start treatment! A drug that was given a positive recommendation for PBS listing in September LAST YEAR is still not readily available to patients who desperately need it.
Last week, Francine had a very confronting conversation that nobody should ever have. A conversation with her life insurance company to enquire about accessing her life insurance to pay for Pembro. She can. All she needs is a letter from two doctors stating that she is terminal with a prognosis of less than 12 months without treatment. TERMINAL, WITH A PROGNOSIS OF LESS THAN TWELVE MONTHS!!! That’s her current status without Pembro. She will get those letters and she will access her life insurance; a path she’s been forced to take as she can’t wait any longer for a simple change of wording.
This clause needs to be changed, and it needs to be changed now! It’s not good enough. Here’s hoping the power of social media can bring about this change.
I could go on about the other little issue of the limit of 35 treatments of Pembro in a lifetime if you have HL, which doesn’t apply if you have melanoma (as long as your scans show improvement or are stable, there’s no limit to the number of treatments you can have), but I’ll save that for another post.
