Ninety percent of patients said the price Gilead is charging for remdesivir is not affordable, and nearly three-quarters said that the next COVID-19 treatment or vaccine should cost no more than $999.

That’s according to a July poll of patient influencers – a group of visible and trusted health consumers – conducted by the Wego Health patient network on behalf of MM&M, many of whom shared comments. 

“My biggest concern is that patients who really need the drug [won’t be able to] afford it; are they going to be excluded? How about the patients on Medicare and Medicaid?” wrote one influencer, Kimberly Dross, who represents the Sjogren’s syndrome, Hashimoto’s thyroiditis and lupus communities. “Every patient should have equal access to it, regardless of their social and economic status.”

When setting remdesivir’s price, Gilead aimed to help “as many patients as possible…and in the most responsible way,” wrote CEO Daniel O’Day in an open letter dated June 29, adding that the final cost is “well below” the value the drug extends to patients. 

However, if the company had weighed patient input when setting the price, one wouldn’t know either from the price itself or from the way the company communicated it. O’Day’s letter makes no mention of whether he backed up his statements by soliciting opinions from those who could eventually take the drug. 

The pandemic “has forced many patients to assume more leadership in their treatment journey,” noted Jack Barrette, CEO of Wego Health. “The industry has a tremendous opportunity to step in and harness the voices of patients living with chronic illnesses to build patient community trust and establish support.” 

One of those areas is in setting price. Had Gilead tapped the opinion of the patient community and disclosed as such in its messaging, both remdesivir’s price and the market reaction to it may have been different. A large majority (82%) of respondents to the MM&M/Wego poll said drug pricing, and specifically the cost of remdesivir, plays into the reputation of pharma either somewhat or a lot. 

To get an accurate read on what consumers think of the price, and what pharma companies should charge for a future COVID-19 therapy or vaccine, MM&M asked Wego Health to run the question by its influencers. The poll drew responses from 39 influencers across a range of health conditions, few of whom (10%) felt the price was acceptable. The sweet spot for the “next remdesivir” is under $1,000, 74% of patients said.

A common theme in the patient responses was that many of those at higher risk for contracting COVID-19, such as people of color, or those predisposed to a more severe case of the virus, such as the disabled or the elderly, hail from communities who have historically struggled to afford high-priced therapeutics.

“That kind of price point is going to alienate the communities that probably need it the most because they won’t be able to afford it and [it will] put the poor communities at an even greater disadvantage,” said Jill Christie, representing the dysautonomia community.

Uneven access could have serious repercussions. “One of my drugs for cystic fibrosis is over $300,000 a year,” wrote another patient, Klyn Elsbury. “The fear is that those who can’t afford treatment will continue to spread COVID-19.”

When asked to share any conversations regarding remdesivir in her community, Lynn Julian, a patient influencer with the rare disease Ehlers-Danlos syndrome, noted that, “Since remdesivir was released to treat coronavirus, and was priced out of almost everyone’s range, [pharma’s] reputation has suffered.” 

Up until June, Gilead had donated a supply of remdesivir to hospitals and doctors free of charge. Moving forward, O’Day said, governments in developed nations will pay $390 per dose, for a total cost of either $2,340 or $4,290 depending on treatment course, and the commercially insured will pay more: $520 per dose, or either $3,120 or $5,720, depending on treatment course. 

The figures, O’Day explained, were based on a finding from a clinical trial (funded by the National Institute of Allergy and Infectious Diseases) that remdesevir helped patients recover four days faster than those in a placebo group. In turn, that would reduce hospital costs by $12,000 per patient, noted the CEO, citing company data showing that each day of hospitalization costs $3,000.

O’Day acknowledged that “there is no playbook for how to price a new medicine in a pandemic,” and that “we are in unchartered territory.”

Pharma companies have raised prices on 245 drugs since the first reported case of coronavirus on U.S. shores January 20, according to an analysis by advocacy group Patients for Affordable Drugs which was first reported by The Hill. Some 61 of those are being used to treat COVID-19 and 30 are in clinical trials.

But companies aren’t getting a free pass on drug pricing. Nine in 10 Americans are concerned about the price of prescription drugs, according to a June poll by Gallup and West.

At a House Energy and Commerce subcommittee hearing this week, lawmakers grilled vaccine makers about their pricing. In December House Democrats passed a bill that would allow the government to negotiate directly with companies for lower prices, a form of price setting which most U.S. consumers support, per a Kaiser Family Foundation survey last October.

The director of non-profit pharmaceutical pricing group ICER lauded remdisivir’s cost as “responsible” based on current evidence. But Democratic lawmakers criticized its price tag, given that the drug was developed with the aid of taxpayer funding and is merely an off-the-shelf medicine originally intended to treat the Ebola virus, not to mention the fact that Gilead is expected to turn a remdesivir profit of somewhere in the neighborhood of $1.3 billion, according to a forecast by Brian Abrahams, an analyst with RBC Capital Markets.

The lesson from this episode is that pricing needs to be collaborative, says Jane Sarasohn-Kahn, the health economist and founder of strategic health consultancy Think-Health.

“The messaging could have been better in terms of contextualizing the social benefit,” said Sarasohn-Kahn. One way is by filtering it through patients and sharing that process. “If you believe there’s a social benefit, tell me why. How do you get there?”

That’s advice others should heed with the next COVID-19 therapy or vaccine. I spoke to a range of experts, and dug into a slew of studies, analyzing the impact of drug pricing and other factors on pharma’s reputational and trust gains since the start of COVID, as well as how the industry can sustain the positivity. That article will appear in the July/August issue MM&M, and online in coming days.