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The Importance of a Patient-Centered Approach in PAH


Derek van Amerongen, MD, MS: I think managed care from its very early stages, more than 20 years ago, has always been focused on understanding and promoting holistic care. To a certain degree, I believe managed care is responsible for creating this mindset of the patient-centered medical home. They really put primary care at the heart of the medical interaction between individuals and the healthcare system.

Nursing care is a critical part of that. In fact, I would tell you that at most national managed care companies, we employ thousands of nurses whose jobs include identifying members, working with individuals with complex conditions like PAH, helping them navigate a very dysfunctional system, and providing them and their family support in terms of education, in terms of accessing resources, in terms of juggling the different providers they may be seeing, different doctors, different hospitals, different clinics, labs, etc.

I think everyone in managed care has always looked at nursing care as being really a cornerstone of how we provide this holistic care which is so important. And making sure that individuals have all of the support and resources they need, so they can also be the best partners with their healthcare team in order to ultimately get to the best outcome.

One exciting area that has really evolved over the last few years is the growth and sophistication of specialty pharmacies. Many health plans either own their own specialty pharmacies or work very closely with them. Specialty pharmacy is, as its name implies, very different than just the general pharmacy, the retail pharmacy, or the routine mail order pharmacy that many people are familiar with over many years. As we move more and more into an era when these drugs for PAH and other conditions become increasingly complex, increasingly expensive, and have very definite safety and tolerability issues that need to be carefully considered, we need a tool such as the specialty pharmacy in order to make sure that people are really getting the right information, the right support, and the right access to the drugs that they need.

One of the things that our specialty pharmacy does, for example, is we have a pharmacist who calls literally every single member who is on a PAH drug every month before the next shipment occurs. They do this to make sure that he or she is doing well, to identify any issues, discuss any questions or problems they may have, and make sure that they have their next visit with their clinician or their clinical team scheduled. And to do some very basic things, such as validating when will they be home so we can deliver this very expensive and important drug to them, so that there’s no channel distribution issues.

So, specialty pharmacies have become increasingly important. And I believe that they are not just a way for us to distribute and process drugs, but really are adding a very important clinical aspect to the care that patients with complex conditions, like PAH, need and benefit from.

For years, many researchers have studied the issue of compliance and adherence, trying to find that magic bullet, if you will, that would lead to better compliance. One of the things that I think everyone has been surprised, if you will, to see over the many decades of research is that it doesn’t really matter what the condition is, what the issue is, compliance is always a problem. And there’s some excellent studies in the literature which show that for many, many conditions, including rheumatoid arthritis, multiple sclerosis, and even types of cancer, once you get to 6, 7, 8 months of ongoing therapy, the compliance rate goes down. And that’s multifactorial, and it’s due to many, many issues including patients’ concerns over the safety of the treatment, the cost of the treatment, the commitment and support from the health professional team. And one of the least important factors is the route of administration. In other words, is it oral, is it IV, is it liquid, is it solid?

One of the things that quite frankly I would love to see is a definitive trial that says, “It’s just the pill.” If it’s just the pill, we could find that right pill and solve the entire compliance issue. But, unfortunately, that’s not been the experience over many decades of research. So, from the health plan standpoint, do we put higher value on an oral treatment versus a parenteral treatment? I would say no, and the reverse as well. We don’t necessarily believe that a parenteral treatment is automatically better, and will have higher compliance than an oral treatment.

At the end of the day, the factors that lead to compliance, as I said, are multifactorial. They’re complex, and they involve patient education, support from the healthcare team, and understanding and clear communication of the risks and costs of the therapy. So, should we put a higher value on a pill versus an IV solution? I would tell you no.

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