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DAVID SEYMOUR
Associate Minister of Health (Pharmac), Associate Minister of Finance

Your MP or the MP of your loved one with Myeloma

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Dear [Name]

I need your help about a desperate situation which has the potential to affect any New Zealander, including yourself.

I have [multiple myeloma OR /my (relationship to you, eg mum, husband) has multiple myeloma.] This is a cancer of the plasma cell, found in the bone marrow. It is currently incurable, but a cure is almost in sight with the treatments overseas.

As if cancer an incurable alone is not bad enough, New Zealand patients lack access to modern myeloma treatments. Australia have five more funded treatments than New Zealand.

This is a serious issue for us because myeloma is a relapsing remitting disease which means it always comes back. Each time it does, or if a medicine isn’t suitable, the patient needs a different medicine.  Overseas, it is standard of care for myeloma patients to go from one medicine to another like this, through multiple lines of treatments. We need range of treatments, but don’t worry, we aren’t greedy – we don’t use them all at once.  If they aren’t effective it isn’t an ongoing cost to the government because they are stopped if they are not working.

In New Zealand though, our medicine access is far behind where it should be. It is not an exaggeration to say that myeloma patients in New Zealand desperately need more medicines and are dying earlier than they need to because they don’t have access to them. Medicines which are run of the mill, standard of care overseas.

Myeloma is not rare. It is out second most common blood cancer. There are about 400 of us diagnosed each year. A number almost the same as the road toll. Think about the amount of money spent to prevent those deaths, and yet this is possibly the first time you have heard of myeloma.

Options for investment list

Daratumumab are carfilzomib are standard of care treatments for myeloma and all on Pharmac’s Options for Investment list. Being on the Options for Investment list means these treatments make economic and medical sense, the stumbling block is funding.

These are medicines Pharmac want to fund.

The medicines we are after aren’t brand new. Not having these medicines means we are missing out on trials because patients haven’t had the medicines they need before having the trial drug. Trails used to be our way to access better treatments but we are now even missing out on them. That means myeloma patients are dying before they need to. It’s more than a desperate situation. It’s heartbreaking and devastating.

This is where you can help. We need these medicines funded and we need your help to get the government to do that. The Trikafta debacle showed that the government can and do get involved with funding medicines.

Please, these medicines are more than desperately needed. It’s a crisis. People are dying when they wouldn’t overseas.

An informal survey by Myeloma New Zealand found hardly any patients were able to access the medicines needed privately because of the cost, which is higher than a lot of the standard medical insurance cancer plans. Or, they had given up their private health insurance because the average age of a myeloma patient is 65 to 70.

Like what is now happening with New Zealand not being able to run myeloma trials, we will soon get to the point where even those with private insurance won’t be able to access some myeloma treatments. The newer treatments coming out won’t get registered here if we don’t have medicines like daratumumab because not enough people will be able to use them (you have to have one before the next). So even those who can go private could start missing out because we are so far behind the rest of the world.

Patients with diabetes are treated for the rest of their life. Myeloma patients deserve to have the same right to live.

I’m asking for your help. The government needs to give Pharmac sufficient funding for the myeloma treatments on the Options for Investment list. Please do whatever you can to make this issue public, and to help us achieve government funding for these medicines.

Please let me know if you need any more information to help with this, or you can contact Myeloma New Zealand admin@multiplemyeloma.org.nz and they will be happy to help.

Yours sincerely,

[Name]