Despite Drug Pricing Concerns, Poll Shows Americans Tolerate High Costs of One-Time Gene Therapies

Gene Therapy illustration

Gene therapy treatments are on the cutting edge of science and can potentially offer a “one-and-done” option for patients battling rare genetic diseases. However, those treatments do come with a high price tag. Novartis’ one-time gene therapy for spinal muscular atrophy has a cost of more than $2 million.

But a new poll of more than 1,000 people shows that high price tag does not phase Americans. On Wednesday, the Pacific Research Institute (PRI) released data that shows Americans overwhelmingly support innovative gene therapies that are seen more as potential cures than long-term treatment. According to the poll results, 78% of respondents agree that the high costs of a gene therapy treatment are worth it, due to the fact that these options are seen as potential cures for disease.

Wayne Winegarden, director of PRI’s Center for Medical Economics and Innovation, said gene therapies have the potential to cure a “wide array of difficult-to-treat diseases.” Among those, he said, are Alzheimer’s disease, autism, cystic fibrosis, HIV and cancer.

“Our new poll shows that Americans see the potential for the innovation from gene therapies to find cures for often-deadly diseases that cut short people’s lives, and illnesses that strike newborns, infants, and toddlers,” Winegarden said in a statement.

Because gene therapies aim to address the underlying cause of disease, rather than treating symptoms, more people are supportive of the possibilities. Poll data showed that 80% of respondents agree that focusing on curing diseases is a greater priority than chronically treating them. That overwhelming support comes even after approval of Novartis’ Zolgensma, which has a $2.125 million cost for treatment. In announcing the approval, Novartis said the price could be spread out to $425,000 per year for five years. Another gene therapy approved in the U.S., Spark Therapeutics Luxturna, has an $850,000 cost as a potential one-time treatment for a rare genetic form of blindness.

The poll comes out when the costs of medication are taking a central role in the 2020 presidential elections as Democratic candidates, as well as the current administration, have been highly critical of drug pricing. In February, seven executives of some of the biggest pharma companies appeared before Congress to answer concerns about those high costs. High prices are the norm for orphan disease drugs. A recent list of the top 10 most expensive drugs marketed in the United States shows each of them has a list price of more than half a million dollars annually.

“Despite higher costs, our new poll shows that Americans are excited about the potential of gene therapies to save people’s lives – and are willing to pay for them, too,” Winegarden added. “Not only do gene therapies provide significant value, but they also have the potential for future health care savings on drugs and doctor visits. Ensuring patients have access to these new cures that can improve their overall quality of life – and in many cases save their lives – is imperative.”

Key findings of the PRI poll include:

  • 78% of respondents agree that developing cures for diseases should be pursued despite high upfront costs.
  • 80% of respondents agree that focusing on curing diseases is a greater priority than chronically treating them.
  • 69% of respondents think that insurance companies, Medicare, and Medicaid should pay for these treatments.
  • 67% support additional costs to their insurance payments to cover these treatments for all patients.

The poll also asked respondents about their trust levels for safety claims made by the U.S. Food and Drug Administration (FDA) when it approves a new treatment. Most respondents, 71%, said they had either high levels of trust or some trust in the FDA’s claim, while 18% had little to no trust. The remaining respondents said they were “not sure.”

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