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(Blog) What do we want?

November 14, 2016

At a recent meeting on compassionate use, one of the attendees asked questions that were met with a prolonged silence in a room filled with academic experts, doctors, bioethicists, and advocates. What is our goal for compassionate use programs? What are we trying to achieve? Do we want more people to seek compassionate use?

I started jotting down a sentence:  “The pain and suffering a child experiences during and after cancer treatment…” And then I paused, looking for and not finding the right adjective to complete the thought. Because I am not sure there is a strong enough word, and because the word would not be the same for everyone.

What is the unit of measurement for suffering? A Google search produces many results, including scientific papers on suffering. One passage stood out for me, as it reminded me of the ethical arguments expressed by drug manufacturers concerned that providing a drug to one patient may jeopardize the product approval for future patients: How do we balance the need of an individual patient with the needs of future patients?

We have an obligation to help. By the time most families consider compassionate use for their child, all of the available therapies have failed. “Compassionate use” rather than “expanded access,” as it is often called, describes the problem much more accurately. When no other options are left, hope comes from compassion, not by expanding previously overlooked options.

Compassion also must be extended to a child’s frantic, exhausted, courageous family. There is no pain as strong, unimaginable, and everlasting as a parent seeing a kid suffer and die.

So for me the answer is a definite “yes”: We want more kids to be able to get the newest experimental drugs if there is even a slight chance the drug might help.

This is why we created our Compassionate Use Navigator program. It is confusing and difficult to figure out how to apply for investigational drugs. We want to make sure that all kids with cancer who might benefit from experimental drugs can get them. – Elena Gerasimov

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