I read with interest the USA Today article from May 31st detailing the hemophilia patient in Iowa who is generating one million dollars a month in costs. I think it is very important to point out that while this may happen in extreme cases of inhibitors, the incidence of these types of costs in the bleeding disorder community is extremely rare. This patient is a significant outlier and far outside the norm. Patients without inhibitors generally average $150-$170 thousand a year for blood factor replacement products. Patients with inhibitors go even higher, with costs often ranging from $700 thousand to $1 million a year. Since advancement in factor replacement therapies, bleeding disorder patients are now able to live near “normal” lives, without the terrible complications associated with this disease. From a societal perspective, the investment in these therapies has been overwhelmingly positive. I would caution readers of the article not to translate the very significant costs for this one patient to a negative perspective on the entire bleeding disorder community.
However, this patient does highlight several important points in the current debate over healthcare insurance coverage. While the drug costs are extremely high, there are certainly other types of diseases that also incorporate expensive specialty drug therapy and that number is rapidly increasing. Specialty pharmaceuticals currently comprise approximately 35% of the total US prescription drug spend and are growing at 17% per year. Estimates are that by 2020 specialty pharmaceuticals will consume at least 50% of the total US prescription drug spend. It is imperative that there are strategies in place to reimburse for current and emerging treatments, ensuring patient access.
One of the major issues facing the US healthcare system is how to spread the risk of high-cost patients across a larger pool of patients to lessen the impact of these catastrophic types of conditions, and the continued development of more advanced, expensive therapies to treat them. We absolutely need to get more healthy, younger patients into the insurance pools in order to avoid these high-cost scenarios “sinking a health plan.” At the same time, it is necessary to consider options such as reinsurance programs to help plans that are negatively impacted by these high-cost outlier patients stay in the market place.
In addition, a concept being reconsidered is the use of state-based, high-risk insurance pools. The intent of a high-risk pool is to separate the high-cost patients from the more healthy people who don't cost much to insure. By removing the higher cost patients, premiums for the healthier patients could be lowered and more people encouraged to enroll in health plans. The high-risk patients would be encouraged to buy health insurance through the high-risk insurance pools that would be subsidized by states and the federal government. While that sounds reasonable, the problem has been that subsidies to support the costs of these pools have been insufficient to make this option affordable for the people they intend to cover.
High cost drug therapy is an issue that is not going away and is only going to grow in significance. We need a coherent, cost-effective strategy that meets the needs of all healthcare stakeholders.
James A Jorgenson, RPh, MS, FASHP
CEO, Visante Inc. & Visante Ltd.
For more information about hemophilia, check out Bleeding Disorders A-Z.
