Advocacy In Action

How a nonprofit stood up to the government on behalf of children with cancer and potentially saved lives.

 

As deplorable as it may sound, the government healthcare system in the UK recently decided to deny access to dinutuximab, an FDA/EMA-approved antibody treatment proven to increase survival rates for children with cancer. With so many changes taking place in US healthcare and beyond, this scenario has left many parents around the world feeling helpless and concerned over “what’s next.”

The drug, dinutuximab, is the only treatment approved specifically for neuroblastoma – an aggressive childhood cancer that has a current 5-year survival rate of less than 50%. Dinutuximab has shown to increase this survival rate in a comprehensive study conducted in the US. The decision to refuse access to this antibody would have profound implications for children with this diagnosis.

The ruling begs the question, “What if it was your child who needed this drug?” For hundreds of parents in the UK, it is their child, and without hesitation, Solving Kids’ Cancer (SKC) decided to appeal this decision in an effort to change government policy on their behalf. This marks the first time a charity has taken such action without a drug company involved.

With pro-bono legal assistance provided by Covington and Burling, SKC went before the National Institute for Health and Care Excellence (NICE) and presented solid evidence for the appeal, which was ultimately upheld. This means that NICE will go back to reevaluate the situation under new criteria – improving the odds that they may override their original decision to deny children with neuroblastoma access to the potentially life-saving treatment.

Children with cancer need true advocates to fight for them when such change is needed. This small group of disenfranchised children otherwise fell under the radar, and no one else was paying attention to the potential consequences.

Solving Kids’ Cancer is a parent-led nonprofit that finds, funds, and advocates for breakthrough treatment options to cure children and support families affected by a pediatric cancer diagnosis by sharing information and negotiating on their behalf. SKC recently became an international organization in order to better address the unmet needs of children both in North America and in Europe, and coordinating the appeal was one of the first acts where they made a real impact utilizing this model.

For now, the UK government has gone back to the drawing board based on the new criteria outlined in SKC’s appeal, making the efforts against NICE a tremendous success. Today, families in the UK are hopeful that they won’t be forced to uproot their families and travel to the US for access to this treatment. If a decision is made otherwise, they can rest assured knowing that Solving Kids’ Cancer will continue to advocate on their behalf.

 

1 Comment

  1. Jane McKay on May 22, 2018 at 6:03 am

    Thank you so much for your help for young children with high dose neuroblastoma in U.K. It would be tragic to deny access to this treatment.My 22 month old granddaughter was diagnosed last October 2017 with high risk Neuroblastoma and may need Immunotherapy and dinutuximab beta soon.
    Please I urge you to continue your hard work in getting NICE to recommend this drug to be made available on the NHS.

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