Parents Become Political Advocates for Children with Rare Diseases

Tasha Nelson’s world turned upside down when her son, Jack, was diagnosed with cystic fibrosis (CF). Little did she know, this would turn her into the political advocate she is today.

There’s a tax bill looming in the House of Representatives that could potentially get rid of the “Orphan Drug” tax credit, which is currently providing aid and incentives toward rare diseases that are affecting 200,000 people.

“Any dime you take away from a company that is working toward saving my son’s life is an insult to my family,” said Nelson in an interview with Today.

Jack was only one month old when Nelson learned of his cystic fibrosis and she quickly realized that she would have to begin dedicating her life to the disease. To learn more about cystic fibrosis, click here.

Nelson has put together fundraisers for CF research and is heavily active on social media. Next, she’s hoping to take a bigger leap toward Capital Hill with the Little Lobbyists organization to lobby against the tax plan. With the loss of the Orphan Drug tax break, drug companies would lose resources needed to help Jack and others like him.

The Orphan Drug Act was established under President Ronald Reagan in 1983 and it allowed drug companies to give tax credits toward developing expensive drugs for rare diseases. Without this tax credit, it’s estimated that 33 percent fewer orphan drugs will be available.

The reason some lawmakers, primarily associated with the Republican Party, are trying to do away with the orphan drug tax credit is financial. Sales were $36.1 billion last year and they are trying to prevent pharmaceutical companies from abusing the incentive in order to make money. The fear is that the increased costs will profit the drug companies, and not provide enough treatment for the people who need it the most.

But the parents of these “orphans” are not worried about that. They are worried about losing research and treatment for their children.

In the case of 1-year-old Jonathan Mauldin, an orphan drug saved his life. Jonathan had been fighting a rare cancer called Langerhans cell histiocytosis. To learn more about this rare cancer, click here.

As tumors began to develop, Jonathan was prescribed to an orphan drug. Because of the drug company’s affordable copay, Mauldin only pays $10 of the $1,500 monthly cost of the drug.

His mother, Rebecca, can’t imagine her life without these affordable copays and fears for the worst. Because of that, she has also become an advocate, and has begun contacting her representatives and making the case known.

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