Kendra Riley’s daughter Olivia was diagnosed with metachromatic leukodystrophy.

It’s a rare and aggressive disorder that attacks the brain and nervous system. Olivia eventually struggled to walk and talk. Olivia wasn’t yet 2 years old when diagnosed, and doctors said the condition would only get worse. Those with the disease are only expected to live to 6 years old. 

Then Keira, another one of Riley’s kids, was diagnosed with the same disorder. 

The disease was caught earlier for Keira, which meant the family could save Keira’s life if they acted quickly. But to do so, the family had to move to Italy for six months because individualized experimental treatments aren’t legal in the United States. 

The Riley family raised hundreds of thousands of dollars to move to Italy and get the treatment. It saved Keira’s life and she is now swimming, doing gymnastics and singing like Taylor Swift. 

Olivia, however, is in hospice. 

“She has seizures every week,” Riley told lawmakers in a past Senate hearing. “She’s on 10 medications a day, and we don’t know how much time you have left.” 

Kansas lawmakers want to make these treatments available in the Sunflower State. They heard a bill, named the Right to Try Act, that allows Kansans with a life-threatening or severely debilitating illness to take individualized, experimental treatments. Treatment could be medication or medical equipment. 

These treatments are tailored for patients based on their DNA. As a result, what is offered to one person would not necessarily help someone with the same disease.

The limited number of people who could benefit from them also means there will never be sample sizes large enough for the treatment to pass through the Food and Drug Administration’s safety trials. 

Keira was only the 32nd child in the world to get the treatment that she received. 

Under the Right to Try Act, a doctor would have to sign off and explain the best-case and worst-case scenarios of the treatment. Patients also need to have considered every other available medicine on the market. The Right to Try Act is meant as a last-ditch effort to heal a patient with a rare medical disease. 

Doctors can not lose their license based on their treatment recommendation. 

Dr. Patrick Bailey, director for health care policy at the Goldwater Institute in Phoenix, said these diseases are as rare as the treatments. It wouldn’t apply to many Kansans, but Bailey said this is needed because medicine is advancing so quickly. 

In 2018, Congress passed one version of the Right to Try Act. The law addresses experimental drugs intended for widespread use. It allowed people to take drugs that had passed FDA safety trials but were still being tested for efficacy. 

“This legislation is vital for preserving the right to try to save one’s own life without being required to plead with the federal government for permission to do so,” Bailey said. 

The Kansas bill doesn’t mandate that insurance companies cover this type of treatment, but it also prevents drug manufacturers from making a profit. That doesn’t mean these treatments will be affordable, but passing the bill does cut down on some costs. Instead of having to travel to another country for medical help, the drug could be sent to the U.S., for example. 

This bill already passed the Senate 36-4. It is not controversial, but Susan Gile, executive director of the Kansas Board of Healing Arts, said there are some things she’d like to change. 

Under the proposed bill, the board of healing arts can’t discipline doctors involved in this treatment. That could give bad actors cover to push phony medicine and face no consequences, Gile said. 

The bill also says patients should pay for the medication. Drug companies couldn’t go after heirs or family members for payment if the patient dies during treatment. Those drug companies could go after the patient’s estate, though, which could mean emptying retirement accounts or taking the family home away. 

And a witness needs to sign off that the patient was told about the risks of these experimental procedures. That witness must be someone who cares about the patient’s best interest — not a representative of the drug company or someone else with an interest in getting the drug used. 

But Gile said this proposal is needed. Just look at what it did for the Riley family. 

Kendra Riley, the mother, said her daughter is only able to walk and talk because of the treatment they got in Italy. No family should have to lose one child when a treatment could have helped. 

“My daughter Keira will now (have a healthy life),” Riley said. “That’s why I support this bill.”