Dear Friends

Our major activity over the past month has been engaging with the independent Panel set up by the Government to review Pharmac.  In addition to preparing a submission to the Panel, we were able to meet and present our submission to them in person, and we also attended a workshop for patient advocacy groups.  See our submission here.

Fellow trustee Dr Ben Schrader, CLL specialist and Malahgan Institute Clinical Director Dr Rob Weinkove and I presented our case to the Panel, and together with the ensuing dialogue we felt it was a valuable and hopefully productive session.  The workshop which was attended by all but one member of the Panel and around 16 patient advocacy groups, demonstrated a strong uniformity of depth and breadth of concerns by attendees on the failings of Pharmac regarding funding applications for medical treatment.

The key points we made there and in our submission were as follows:

• Dialogue between Pharmac and agencies making applications for funding is characterised by long delays, lack of feedback as to where a therapy is at in the funding consideration process, and lack of transparency.  A much more open approach to dialogue is required.
• There are inefficiencies and blurred responsibilities in the structure and function of Pharmac, eg assessment and procurement need to be done by separate organisations.
• Funding is a major issue, both absolute budget, and the percentage of health budget NZ spends on medications compared to other OECD countries.
• Opinions of NZ consultants and specialist societies are rejected, as are international therapeutic guidelines put together by world authorities. There are examples, too, of the medical literature opinion being rejected as inadequate.
• There are examples of medications being widely available in other countries that are life-saving, and which Pharmac rejects funding thereof. This has resulted in people leaving NZ to get access to these life-saving medications. Case histories of such funding applications to Pharmac are available.
• Lack of funded international standard-of-care treatments in NZ also means we have very few clinical trials, a loss both for patients and clinicians.
• There are mechanisms for assessing how efficacious a drug is eg QALY, which should be a component of Pharmac’s decision process. Another component of non-funding of therapies is that those who can fund medications survive, and those who can’t don’t.
• Several attendees commented on “hidden” costs of treatment not being considered by Pharmac, such as the need to attend a tertiary hospital eg Day Stay Unit for treatment, which might involve long travel times for some people, the need to curtail employment, and the extra challenges that the elderly, disabled, and minorities such as Māori and rural living people face in accessing health care. Cancer Care at the Crossroads is an expansive guide to how oncological services in NZ should be.
• The consequences of successful treatment, such as returning to work as a fully functional member of society needs also to be factored into costs/savings.
• There are international models that function better re drug funding than Pharmac that Pharmac could transition into eg UK (NICE), Canada (CADTH),and Australia (PBAC).
• There have been major improvements in treatment options in oncology particularly over the last decade plus, but Pharmac’s response to these, often expensive, therapies has been anachronistic, and people are dying unnecessarily as a consequence.
• Vacillation has been a feature of serial decisions by Pharmac re grading of funding recommendations for medications. For an example of this see the final page of the submission on the history of Pharmac committee decisions over the past 6 years regarding ibrutinib.
• “Deeply frustrating“ has been an expression used to describe the interaction between funding application agencies and Pharmac.

The Review Panel will present its interim report to the Government on 16 August. We are of course awaiting this with great interest, and I will report to you again as soon as we’ve had an opportunity to digest it.

Best wishes

Neil Graham

Dear Friends of CLLANZ

Skin infection (cellulitis) and CLL – a cautionary tale

Cellulitis is an infection of the skin, most commonly of the legs. It is usually due to bacteria. It commonly arises when the integrity of the skin is breached by a penetrating injury, often in the context of a pre-existing condition, such as diabetes, and conditions where immunity is impaired, such as CLL.

Cellulitis is the second most common primary site causing severe infection in patients with CLL (lower respiratory tract infections are the most common). It is often associated with sepsis/septicemia; when this happens, mortality is about 25% one month on from the episode of cellulitis. So awareness of what cellulitis is, and prompt antibiotic treatment thereof can save lives.

Professionally and theoretically, I have always been concerned about the risks of cellulitis, but in practice I’ve always led a physically active lifestyle, acquiring numerous skin injuries in the process. So it’s perhaps surprising that I hadn’t ever got cellulitis.

That all changed recently, when I had a penetrating injury of my left leg by a stick. Twelve hours later, I awoke in the night feeling very unwell, with a red, swollen, and painful leg. I was admitted to hospital for five days of intravenous antibiotics (blood cultures were positive for E. coli), with a good response, and was sent home on oral antibiotics.

About a week later, the infection recurred, despite oral antibiotics, and I again felt very unwell. I was readmitted to hospital, the first few days of this period being in ICU/HDU because of my level of unwellness. Blood cultures were again positive for E. coli. This time, I was an inpatient for a total of fifteen days; IV antibiotics for all that time, then a further week of IV antibiotics as an outpatient, after discharge. This seems to have done the trick, and I am currently back to where I was pre-leg injury, health-wise.

So, for those with CLL, please look after your skin, particularly on your legs. Wear gumboots and other protective clothing when in the outdoors, seek prompt medical advice/treatment for any skin injuries, and keep a careful eye on such injuries. Sepsis can be serious/fatal quite quickly.

I for one have certainly adopted a change in approach to looking after my skin as a consequence of this episode.

Best wishes

Neil Graham

Dear Friends of CLLANZ

It was very interesting to learn in the news this week of Pharmac’s ‘wish list’ of 73 medicines it would like to pay for, if it had the budget to do so.  It’s the first time Pharmac has released figures for what it calls its ‘options for investment’ list. The cost of funding them would be $417,670,000.00. Newshub got the story from an Official Information Act request – see it here, and see Pharmac’s formal response here.

The wish list is separated into proposals (118) and medicines (73), (as some medicines treat several illnesses) and it comes with a breakdown of how long they’ve been waiting.  Although the list hasn’t been released, we expect Ibrutinib to be on it, as one of the 14 (of the total of 73) that have been waiting the longest, i.e. for 6+ years.

The timing of this is interesting, coming as it does in the lead-up to the Budget (May 20), and with Health Minister Andrew Little confirming to Newshub that any additional funding for Pharmac comes down to a political decision. That reality is also reflected in the government’s decision to exclude funding from the ‘independent’ review of Pharmac that is currently underway.

Filling the budget hole to fund the 73 ‘wish list’ medicines would mean a 40% increase in Pharmac’s funding, an increase that would go some way to bringing us into to line with Australia, the UK, Canada, etc.  We don’t know what Pharmac’s bid has been for this year’s Budget, but last year they didn’t ask for any more money at all!

We in CLLANZ have worked hard over recent years through petitions, submissions, engaging with media, marching on Parliament, appearances at select committees, and actively engaging with Pharmac to advocate for access for CLL patients to Ibrutinib, among other treatments, as well as treatment pathway reforms, and faster, more transparent funding decisions. We’re very proud to have been part of the push to reform Pharmac, which is now seen as losing the PR battle.

We hope this work will bear fruit in the coming Budget, but in the meantime we intend to continue our advocacy as vigorously as possible.  In this regard I warmly encourage you to support the current ‘Lie Down For Life’ campaign running nationwide on 12 May by Patient Voice Aotearoa. And if you haven’t already signed their petition to Reform Pharmac and Double its Budget, you can still do so here. This will be presented to Parliament on 12 May, the same day as we Lie Down For Life!

Kia kaha

Neil Graham