Are you on an Infusion Treatment?

May 30, 2024 | Advocacy, Treatments

At MSNZ we would like to understand more about patient experiences with infusion treatments.

The first line Disease Modifying Treatment (DMT) options we have been successful in advocating for in NZ are considered some of the best in the world. Due to the availability of these treatments and adopting healthy lifestyle recommendations, people are reportedly managing their condition well.

However, lengthy monthly or six-monthly infusions can be challenging for many. We are hearing of people having to travel to their main centre hospital for several hours and stay overnight, family members having to take time off work to drive their loved ones, or people having to take extra sick leave or unpaid time off work to attend their regular appointments. As MS affects more and more younger people, balancing long infusion days with family and childcare commitments can also be a struggle.

We also know that around the country there are several centres experiencing delays with access due to overwhelming demand on clinical departments, and in particular, busy infusion centres.

On the horizon

There are several new treatments (Cladribine and Kesimpta) or alternative subcutaneous versions of current DMTs (Natalizumab Subcut) that are currently sitting on Pharmac’s Options for Investments list. We are following the progress with Ocrelizumab Subcut which passed Phase III trials and is currently undergoing regulatory approval with Medsafe.

What is special about these treatments?

The subcutaneous versions have shown, in trials, to have the same safety and efficacy of the currently available versions. The injection form takes a much shorter time minimising demands on healthcare resources and giving patients back time.

• Kesimpta is a subcutaneous injection, intended to be self-administered. Initial dosing of 20 mg at Weeks 0, 1, and 2, followed by monthly subcutaneous self-injections starting at Week 4.
• Natalizumab Subcut would be administered as an injection every 4 weeks (we appreciate many have their infusion every 6-weeks).
• Ocrelizumab Subcut every 6 months (the same as the current administration schedule).

While these treatments would likely be administered initially in hospital clinics for monitoring purposes, ultimately, the goal would be administering in clinics closer to people’s homes or by the patient at home their self.

Mavenclad® (Cladribine), however is administered as a tablet for RRMS, in two treatment courses over two years. Each treatment course consists of two treatment weeks. For a treatment week, patients would be prescribed to take one or two tablets, once a day for 4-5 days. The treating neurologist would decide the number of tablets per day (1 or 2) and number of treatment days (4 or 5) depending on the patient’s body weight. There is no Cladribine treatment between the two courses. Recent studies show that only 10% of patients require retreatment in Years 3 and 4. Further analysis of 847 patients of treatment in Germany showed that by Year 5, 635 (75%) remained “drug free” meaning they either did not require retreatment nor had switched to another DMT.

Why are these treatments so important

These treatments would be transformational for many people with MS, particularly those away from main centres, those who have difficulty with travel or taking time away from work or family commitments, people who may need to travel often or for long periods of time.

We appreciate, injections, and particularly self-injections, may not be for everyone.

Where to from here?

Unfortunately, Pharmac are unable to provide a definitive timeframe for if, or when any treatment would be funded. This is because the relative priority of funding one medicine compared with other medicines can change over time. Details like the relative health benefits, the amount of funding available, the success of negotiations with the suppliers and/or new clinical data, and the mix of other funding applications being considered at any one time, are all examples of factors that may change the relative priorities of funding choices.

MSNZ is meeting with Pharmac in early July, where we want to advocate to them what the patient impact would be for including these treatments as options for consideration.

MS Brain Health international best-practice recommendations, which MSNZ endorses, are that the full range of disease-modifying therapies should be made available to people with active relapsing forms of MS, regardless of their treatment history, to speed up adoption of the most appropriate treatment strategy that optimises effectiveness and safety for each individual.

Treatment choice should always be a mutual decision made between the person and their neurology team, taking into account the individual’s unique circumstances.

Please share your story

We want to know, how your treatment is working for you, what barriers you face to accessing your treatment, and how would these options overcome these barriers.

Please email info@msnz.org.nz with your story by 30 June 2024 so we can make sure your voice is heard!

We know from experience the patient voice matters so please share yours and make it count!

Do you have Secondary Progressive MS?

Siponimod was reviewed in September 2023 by the Neurological Advisory Committee and their recommendations were reviewed at PTAC’s February 2024 meeting. We are still awaiting the minutes of this meeting but have been advised no further clinical advice is required for this application and is now under assessment so it can be ranked on the Options for Investment list.

We will also be advocating at our meeting to progress the funding of Siponimod. While we have already submitted many comments from people with SPMS about how important this treatment is to be funded, the more patient impact stories we can provide the better. Please also email info@msnz.org.nz with your story by 30 June 2024 so we can make sure your voice is heard!