Playtime for 2-and-a-half-year-old Eli often involves trucks, but he spends a good amount of his day undergoing four breathing treatments and taking five different types of medication.
His mother Juliana Keeping spends most of her day fighting for him.
Eli was born with cystic fibrosis, a deadly genetic lung disease. Juliana uses her blog "HiThisisEli.com" to raise awareness and document the daily highs and lows of raising a child with a chronic illness, but it’s an online petition she hopes will create change.
"I am asking Vertex CEO Jeffrey Leiden to reconsider these unconscionable prices for drugs," she writes in her blog.
Vertex Pharmaceuticals developed two ground breaking drugs Kalydeco and Orkambi. The two treat the actual cause of cystic fibrosis, not just the symptoms.
Juliana learned Eli is eligible for Orkambi, a two drug combination, but was outraged to learn it costs $286,000 a year. Juliana said Eli will eventually receive Orkambi. Health insurance and a grant program should cover its cost. But she's concerned the price of drugs will continue to rise, and there's no way of knowing how long medical insurance will cover their costs."These are brilliant people and they've done so much and I really want to emphasize how much I appreciate that work, but the drug prices are getting out of control. I can understand that there's an elevated price but I'm just asking them to be reasonable," Juliana said.
Change.org shared her online petition. In less than a week, almost 18,000 people signed it. One supporter in South Africa wrote, "I'm signing because, my little girl has cystic fibrosis. But even if I sold all my belongings, including a farm, I would not have enough to buy one year’s supply."
A Spokesperson for Vertex Pharmaceuticals said in the company's 26-year history, it has only posted a profit one year. Its CEO Jeff Leiden has a base salary of $1.1 million and received a total compensation package of $29 million in 2014. A majority of his salary was in the form of stock awards. In his 3-year tenure, Vertex pharmaceutical’s stock went from $30 to $100. The company said it’s likely because of the development of drugs for cystic fibrosis, something the company wasn't doing prior to Leiden's tenure.
In response to Juliana's petition to drop the price of the drugs, Vertex sent us this statement:
"Together with the cystic fibrosis community, we have made tremendous progress in the fight against this rare and life-shortening disease. Our two medicines are the first and only treatments that target the underlying cause of CF for people with certain forms of the disease. The majority of insurers cover our medicines, providing broad access for patients across the country. We offer comprehensive assistance programs to eligible patients who need additional help or who do not have insurance."
The Cystic Fibrosis Foundation provided Vertex $170 million in money raised by donations. Although it is a sizeable donation, Vertex said it did not cover the entire cost of research, development and FDA approval of Kalydeco and Orkambi. The company could not provide News 9 with an exact dollar amount, only to say it was in the billions and took 17 years.
"Gouging is a negative word, but I do think that's what's going on. I understand research and development but you've been handed charity dollars and it's not responsible to churn out drugs at the end of this pipeline that cost more than a home," Juliana said.
Juliana plans to deliver the petition to Vertex CEO Jeff Leiden in person. She also will continue to fund raise for the Cystic Fibrosis Foundation so research can continue and more drugs can be developed.
Read Juliana's blog.Sign Juliana's online petition