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The promise of curing deadly diseases by administering a one-time therapy that rewrites a patient’s genetic code is no longer the stuff of science fiction. Yet this innovation comes with a steep price tag.

Zolgensma, approved for spinal muscular atrophy (SMA), has a list price of approximately $2.1 million. Other gene- and cell-based therapies coming to the market have launched at prices in the hundreds of thousands of dollars.

With dozens of gene therapy products in the pipeline, employers and health plans are rightfully concerned about how the evolution of gene therapy will affect their ability to keep health benefits affordable. Enter Express Scripts and Cigna: The companies have announced Embarc, a program that aims to provide employers and health plans with a predictable cost for gene therapy.


Details on Embarc are scant, but a few core components are known: Cigna’s intention is to initially include two drugs, Zolgensma and Luxturna, a treatment for a rare form of inherited blindness, though others may be added in the future. Patients in the program who receive therapy will not have to pay anything themselves. The fee may be less than $1 per enrolled member per month.

That sounds promising. But should employers jump into Embarc based on the limited information available or wait for more details? Here are four things to consider:


The cost. Although $12 a year per member may not seem like much compared to the price tag of gene therapies, it could represent a significant sum for large employers that provide benefits for thousands of workers and their family members. For smaller employers already strained by the high cost of providing health insurance, paying an additional $12 a year for each employee and covered family member may be too much, even when measured against the risk of having to pay for a gene therapy.

The risk. Understanding the risk of having to pay a gene therapy claim is essential for all employers, large and small. SMA occurs in 1 in 6,000 to 10,000 live births. The type of blindness treated by Luxturna, known as RPE65-associated inherited retinal dystrophy, is even rarer, affecting only 1,000 to 2,000 individuals in the United States.

How common or uncommon a disease is represents only one part of the story. What matters to employers is how likely one of these individuals will be covered by the employer’s benefits. The diseases treated by Zolgensma and Luxturna are genetic and generally diagnosed during childhood, or even infancy. Thus, employers can analyze the proportion of their workforce that is of child-bearing age to help determine the likelihood of needing additional gene therapy coverage.

Understanding other demographics of the diseases is also important, including whether a disproportionate number of individuals with them are in the geographic regions where the employer is based, or if they are commonly covered by government health programs. Also to be considered is whether other therapies are available for these patients. For SMA, another treatment that modifies the disease course is available, which may reduce the number of patients to be treated with gene therapy.

Fully understanding the disease incidence and population demographics may further decrease the chance of an employer seeing an already rare disease in their population.

Current insurance coverage. The purpose of health insurance is, in part, to shield individuals or organizations from unexpected medical costs. Before an employer jumps at the Embarc opportunity, it should thoroughly review its current health plan coverage to determine what it would cost for an employee’s family member to get gene therapy without Embarc. That cost should be weighed against the costs incurred with the program.

Between conventional health plan coverage and stop-loss insurance, employers may find they already have adequate protection without additional programs.

Program specifics. Employers seriously considering Embarc should be prepared to ask specific questions about how the program works. Cigna touts that the expertise of Accredo and CuraScript — Express Scripts’ specialty pharmacy and distribution services — are involved in the program. Does this mean Luxturna or Zolgensma would need to go through one of these entities to be eligible for Embarc? If so, would that limit where patients could receive the gene therapy, as not all hospitals or doctors may be willing to get the drug from Accredo or CuraScript?

There may also be a risk of misaligned incentives, as the entity meant to protect the employer from the risk of gene therapy expense (Cigna) will also be making money when gene therapy is dispensed by one of its specialty pharmacies. The program also highlights that patients will not share the cost of gene therapy. Is that $0 cost share the result of Embarc paying the cost, or is Accredo connecting the patient to a manufacturer assistance program and paying down the cost share in that way? Knowing how the program functions and where an organization like Cigna makes money on it may help employers negotiate the rate and make a sound decision.

Paying for gene therapy is a complex issue with few solutions to date. I applaud Cigna’s Embarc offering as an effort by payers to come up with solutions that facilitate access to costly therapies. That said, I also believe that employers would be wise to do significant homework on the topic and the offering before signing on. Employers need more details on the program to make the right decisions in a rapidly evolving marketplace.

Jeremy Schafer is senior vice president at Precision for Value, a company that provides services and infrastructure to support life sciences companies.

Editor’s note: The article was updated to clarify the status of the drugs that Cigna would like to include in Embarc.