Unfunded drugs and clinical trials

Some medicines for treating bowel cancer are fully funded in New Zealand but others are not. However, cost-share programmes are available for Keytruda and Avastin where the cost of the medicine is shared between the patient and the manufacturer. Participation in a clinical trial may offer medicines that work better than current treatment options, so ask your oncologist if you are eligible for trials recruiting currently or in the future.  

Unfunded immunotherapy treatments and co-share funding programmes

Immunotherapy treatments for metastatic bowel cancer are currently not publically funded in New Zealand. These include Cetuximab (Erbitux) and Bevacizumab (Avastin).

Pembrolizumab (Keytruda) has recently been funded by PHARMAC in the treatment of some cancers such as advanced melanoma, but not for metastatic bowel cancer against which it has proven effective.

However, two ‘cost-share’ programmes are available in New Zealand to help patients access Keytruda and Avastin. The manufacturers, Merck, Sharp and Dohme (Keytruda) and Roche (Avastin) offer programmes to help pay for the cost of the drugs.

Blood test for Bowel Cancer

Keytruda (pembrolizumab) cost-share programme

Keytruda is particularly effective for patients diagnosed with Lynch Syndrome.

Keytruda is given by infusion every three weeks and the number of treatments needed depends on the individual. Patient cost contribution is capped at $60,000 + GST (approximately $69,000) and then the manufacturer, Merck, Sharpe & Dohme, will take over payments for as long as the patient needs Keytruda.

It is important to note that the cost-share only applies to the cost of the drug itself, not its administration. A Ministry of Health directive prohibits the administration of unfunded drugs in a public hospital so the patient must meet the cost of administering Keytruda in a private clinic (approximately $100,000 depending on the number of treatments needed). 

These costs can include a courier to transport Keytruda, making Keytruda up into a bag ready for infusion, a dispensing fee, clinic time, and other administrative fees and charges.

To find out more about the Keytruda cost-share programme:

  • Bowel Cancer NZ can provide assistance and information
  • Talk to your oncologist to see if Keytruda is an option for you
  • Visit a Keytruda information page here.

Avastin (bevacizumab) cost-share programme

A Roche website provides information about patient access to the cost-share programme for Avastin and a list of contact details for patients to obtain further information. The cost-share agreement with Roche will only pay for the cost of the drug and the patient must still pay the additional costs (as outlined in the Keytruda information). Talk to your oncologist about whether Avastin is right for you, and how to access the cost-share programme. 

Further information about Avastin can be found on the Avastin Data Sheet available here and enquiries for more information can be directed to the Roche Medical Information team on 0800 276 243 or by emailing: [email protected]. Bowel Cancer NZ can also provide assistance and general information.

Some fundraising ideas

Keytruda and Avastin are not currently funded by PHARMAC for the treatment of bowel cancer. If your oncologist recommends Keytruda or Avastin for you, the cost-share programmes will be helpful and here are some ideas for raising the additional funding you’ll need.

  • Private Health Insurance: If you have private health insurance, check with your provider to see if your policy includes cancer care.
  • Life Insurance: After a diagnosis of serious or terminal illness, some life insurance and trauma cover policies allow you to claim a lump sum portion of that insurance to help pay for treatments. Check with your provider if this applies to you.
  • Mortgage repayment insurance: If you have mortgage repayment insurance, there may be a disability clause that could mean your payments are ‘waived’ by the insurer or a claim may be payable for Total and Permanent Disablement Benefit (if you have been unable to work for more than six months and there is no likelihood you will ever return to work).
  • Take a mortgage holiday: Most banks will allow a 3 month break from home loan repayments however this is subject to their loan criteria, and terms and conditions. Note that the interest on your loan continues to accrue during the holiday.  
  • KiwiSaver: KiwiSaver will allow withdrawal of funds if a diagnosis of serious illness permanently affects your ability to work or is terminal. You can withdraw funds in total, including your and your employer’s contributions, the $1,000 kick start (if eligible) and any tax member credits. You’ll need to provide medical evidence to support any application made on this basis.
  • Crowd funding sites: Crowd funding sites like Givealittle are good platforms for personal fundraising. The Fundraising Directory has a number of great ideas too.
  • Consider selling assets: You may consider selling assets such as your house, a car, or a business. If you are receiving benefits from WINZ, let them know about any income generated from asset sales, although it’s unlikely to affect your payments from them (see more here). If you invest the money, interest earned will be taxable income.
  • Reverse mortgage: If you own your home, check with your bank to see if they will provide a reverse mortgage so you can raise money against the equity in your property.
  • Grants: Some private clinics have access to grants made possible by generous benefactors. Check with your private provider to see if this support is available.
  • ACC: This may be an option for funds if you have had a previous misdiagnosis, delayed diagnosis, or probably occupational exposure.
  • WINZ (Work and Income): They do provide several social benefits. Contact them as soon as possible because any financial assistance will be given from the date of contact. A Community Services Card can help with medical costs and other services and a sickness benefit is available for short-term help. The Invalid’s Benefit can provide longer term assistance and you may qualify for extra help through accommodation supplements and some funding for medical bills. You may be eligible for travel and accommodation costs too if you travel some distance to medical appointments. For information about entitlements, visit the website or call WINZ on 0800 559 009.
  • Ministry of Health wig subsidy: Some treatments will cause temporary hair loss and the MOH provides a subsidy to assist with the purchase of a wig. The entitlement for temporary hair loss is $408.88 (incl. GST) over a one year period. Find out more on the MOH website here.

Funding of medicines in New Zealand

New medicines and treatments in New Zealand need Medsafe registration as a first step towards consideration for funding by PHARMAC. Medsafe reviews data on all medicines to ensure the research is sound and that these medicines are effective and safe for the intended treatment. Once registered, a medicine can be put forward for funding. If successful, the cost of the medicine is part or fully funded by the New Zealand government. The government entity responsible for determining the funding of Medsafe registered medicines is called PHARMAC.    

Clinical trials

Cancer Trials New Zealand supports the development of new research to improve outcomes for New Zealanders at risk, or already facing, the challenges of cancer. Trials investigate new ways of preventing, diagnosing, treating and monitoring cancer, and new research seeks to refine established treatments and the delivery of care within our cancer services. Some clinical trials offer medicines that may work better, or have fewer side effects, than current treatment options, and participation in a trial helps to advance research that can benefit others in the future. If you are interested in taking part in a cancer trial, ask your oncologist if you are eligible for any trials recruiting currently or in the future.