John Haydon has put a face on the power of social media and on the willingness of pharmaceutical companies to support patients to deal with the high cost of their medications.
Haydon, a leading expert on helping nonprofits use digital media to conduct online fundraising (and the original author of Facebook for Dummies), suffers from an extremely rare form of cancer called follicular dendritic cell sarcoma.
His doctor prescribed a daily pill called Tagrisso that is made by AstraZeneca and costs $16,000 per month, but his insurance company refused to cover it despite his doctor’s assertion that it was “the perfect fit to fight my cancer.” Why? Because it was approved by the FDA in 2017 for a different type of cancer.
Haydon’s appeals to the insurance company fell on deaf ears. “I was completely surprised that red tape could cause me to die,” he said.
Then he heard about an AstraZeneca program called AZ&ME that markets itself with the tagline “If you can’t afford your medications, AstraZeneca may be able to help.” Facing a $192,000 bill for a year’s worth of the Tagrisso, Haydon and his doctor submitted paperwork on July 11 to see if AstraZeneca could help with the costs.
Tom Ahern, who the New York Times called “one of the country’s most sought-after creators of fundraising messages,” and other social media influencers had already decided to try to tip the scales in Haydon’s favor. They turned to Change.org to petition AstraZeneca to approve Tagrisso for his use and to assist with the “staggering cost.” The petition went live on July 10 and gained traction on July 11.
“John and I both work exclusively with charities, helping them raise more money, and we bonded when we first met over our missions of improving charity performance using basic marketing tools, skills, and behaviors.” Ahern said earlier this week. “And he’s 53 with cancer. I’m 72 without cancer. I know the last thing one should expect of disease is fair play ... but this just didn’t seem right, to me nor to John’s many other friends. He has a very large professional following for his blog and workshops.”
AstraZeneca called Haydon on Friday, July 12 -- just hours after 2,181 people signed the Change.org petition and after an onslaught of tweets and Facebook posts -- to ask for his shipping address. On Saturday morning, Haydon received a year’s supply of Tagrisso well ahead of the 5-7 business days that AstraZeneca tells applicants that it will take.
Was the fast decision tied to the extra attention? AstraZeneca says it doesn’t comment on individual patient cases, but Haydon says he’s convinced “social media gave my issue more visibility and definitely expedited the process.”
Ahern said he was “thrilled” that AstraZeneca responded: “You can’t predict these things. I felt that given a chance to look like the good guys, they might want to grab that. This felt like something they could easily do and feel good about.”
Haydon says the shocking part to him was that “my friend network created the petition and drove this while I’m trying to deal with my cancer. I just wonder how many people don’t have networks like mine.”
“For more than 40 years, AstraZeneca has helped patients through one of the longest standing patient assistance programs in the industry,” said Stephanie Wiswall, director of external communications and affairs in Delaware. “Since 2008, we have provided prescription drug savings to more than 4 million patients in the United States and Puerto Rico. ”
AstraZeneca declined to answer specific questions about why this drug costs $16,000 per month. But Wiswall did say in an e-mail that “AstraZeneca has always taken a thoughtful approach to pricing, and we continue to do so, considering many factors. In addition to our significant R&D investments, we consider clinical value, size of patient population, government/payer coverage requirements, patient affordability, competition and other market conditions.”
Haydon will have to reapply next July to renew the free supply. But he – and his family – are relieved that AstraZeneca has provided this extra support, giving him more time with his family and the chance to thank friends for their support.