The sick shouldn’t have to beg for life-saving drugs

By the time Josh Hardy was 7 years old he had beat cancer four times. After a bone marrow transplant, he became infected with a rare virus that no drug on the market could effectively treat. However, there was a new medicine being developed in North Carolina that was showing promise in a small clinical trial. Naturally, Josh’s mom, Aimee, wanted it for her son, but neither she nor Josh’s doctors could get it.

Imagine the despair you would feel watching your child fight cancer four times, only to have an infection further threaten his life. You know there is a drug that could potentially save him, but you can’t get access to it. Just imagine it.

Aimee did what every parent would do: she started telling Josh’s story to anyone who would listen. In doing this, she created a social media campaign that got worldwide media attention. The FDA and the drug company eventually agreed to let Josh try the drug they were already safely giving to others enrolled in the clinical trial.

Now, a year later, Josh is home and healthy. It’s no exaggeration to say this drug saved his life.

Josh’s story had a happy ending, but for thousands of sick people every year, the story doesn’t end happily. Mikaela Knapp’s story is one such example.

At age 24, Mikaela was diagnosed with a deadly form of kidney cancer that migrated into her bones before she even knew she was sick. She went through every known treatment for the cancer in a matter of months — nothing worked. Mikaela’s high school sweetheart, Keith, heard about a drug in development that was successfully treating people with this same cancer. Like Josh, Mikaela wasn’t allowed to enroll in the clinical trial.

Mikaela and Keith launched a social media campaign to try to get access to the drug, but it wasn’t enough. The FDA didn’t help, the drug company didn’t bend and Mikaela didn’t get access to the drug.

She died on April 24, 2014.

Five months later, on Sept. 4, the FDA gave final approval to the drug that could have saved her life.

No family should have to launch a social media campaign or beg the government and drug companies on national television for the chance to save their child, their wife or their mother.

That’s why the Goldwater Institute is leading the national effort to have every state adopt “Right To Try” laws. Right To Try gives terminally ill people the right to try investigational medicines under development that have passed initial FDA safety tests and are being used in clinical trials. Nevada lawmakers are considering a Right To Try law this session.

When dying people have exhausted all available options, they should be able to take a potentially life-saving drug if their doctors think it might help. Right To Try will allow patients to work with their doctors and manufacturers of investigational drugs to determine a treatment plan that may work for them.

This law won’t save every person with a terminal illness; but it will give people hope when they need it most and perhaps more time when they want it most.

Right To Try is already law in 15 states, and 20 more are considering making it law. It is completely bipartisan — passing with nearly unanimous support in both red and blue states and being signed into law by both Democratic and Republican governors.

Here in Nevada, Assembly Bill 164 — the Nevada Right To Try Act—passed with unanimous support in the state Assembly. Every single member of the Assembly believes that dying people should have the right to try to save their own lives.

We hope the state Senate will take action on Right To Try quickly and put the bill on Gov. Brian Sandoval’s desk soon.

Patients can’t wait, and they shouldn’t have to. We have the opportunity to help them now — let’s take it.

Kurt Altman is the national policy adviser and general counsel at the Phoenix-based Goldwater Institute.