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Value of Early Diagnosis of PAH in Managed Care


Derek van Amerongen, MD, MS: PAH is absolutely a rare disease. I think, and I would certainly defer to the clinicians and the researchers to give you the exact numbers, but it’s roughly something like 1 to 10 people per million individuals in the United States. So that means if you had a health plan of a million people, you might have literally 1 to 10 people out of your entire plan with the disease. Certainly from the managed care perspective we want to make sure that we are offering treatments and options for every condition that is potentially affecting our members. It does mean that this obviously has a lower attention level and priority than something like oncology, diabetes, or heart disease. At the same time there is a real challenge with rare diseases that health plans are becoming more and more aware of, which is that even though individual conditions like PAH may have a small number of members, as you add up the very large number of uncommon and rare diseases and orphan diseases, the aggregate cost can be very substantial.

Our focus as health insurers should be on making sure that all the options and treatments are available to members. I think it’s really the responsibility and the purview of the clinician to decide which type of treatment is best, and the researchers certainly are the ones who should be in the forefront of creating and evaluating those new treatments and bringing them to market.

One of the very important roles of managed care, and where I believe health insurers really bring value, is increasing the ability to identify individuals with conditions like PAH and identify them earlier. We have developed many sophisticated algorithms and predictive modeling tools to help to identify people with all types of conditions, whether it’s PAH or another rare disease, or something very common like diabetes, in order to identify the needs and resources that those members will have, and then to leverage those resources as quickly as possible. So ideally (a) we get people into treatment as quickly as we can, and (b) avoid any potentially adverse events that might occur because that individual isn’t getting the support and care that he or she needs.

I think managed care has always understood that if we can identify individuals with medical issues, especially complex issues like PAH, as early as possible, we can hopefully connect them with the physicians and infrastructure that will help them address their conditions and avoid unnecessary complications, avoid duplicative services, prevent them from deteriorating faster than they otherwise would have, and obviously there are two important outcomes as a result of that.

Number one, from a medical standpoint, and quite frankly as a medical director and physician, I think this is the most important attribute, that we would hopefully help that individual maintain their health status and even improve their health status longer, as long as possible. Secondly of course, there’s the cost aspect. Because if we can avoid unnecessary services, if we can prevent preventable events such as hospitalizations, than that will obviously help lower the total cost of care that that individual would require.

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