Colleen, PH Specialty Pharmacies and You...

Here is a guest blog from Colleen Brunetti ... co-founder of PHA's Generation Hope, blogger and PHA Board member.  As you'll see below, Colleen well represents the Power of One as it's exercised for the good of many. Soon, the Specialty Pharmacy Feedback Committee will come to reality. You'll be hearing a lot more details from PHA as that takes place...

Today I am thrilled to bring to the PH community a new initiative that, for me, has been several years in the making. But first, here’s how we got to today…

I have been diagnosed with PH for five years, and like many of you, quickly had to learn to navigate a very complex healthcare system, including the delivery and management of medications that can only be procured through a specialty pharmacy.

It wasn't very long into this experience that it became apparent that this is not always a seamless process. For a couple of years I struggled to get deliveries as promised, or I would call to order a prescription only to find out I needed a renewal (which delayed delivery), or be blindsided by company protocols that did not meet my needs as a patient and made me very concerned for the specialty medication delivery process for the patient community as a whole.

As I fought these issues out one by one, and participated in online PH communities where it was abundantly clear that I was not the only one going through challenges, it became obvious to both PHA and myself that something needed to be done.

PHA has been helping me address these concerns via the Corporate Committee, a group of representatives 

from many of the major companies who have a stake in the PH experience (specialty pharmacies, drug manufacturers, etc.). It started with a letter I wrote to the committee over a year ago expressing my concerns and frustration. The letter was well received by industry representatives and we have been assured of their cooperation and support with what I am about to share.

Through our ongoing and collaborative efforts, I am very pleased to tell you that we are in the processes of forming a Specialty Pharmacy Feedback Committee. This committee will be comprised of patients, caregivers, industry representatives, PHA, and Caring Voice Coalition. Our goal is to create a process by which patients can quickly and efficiently get major concerns with their specialty pharmacy addressed. Further, we will strive to identify both areas where improvements can be made, and also best practices that can be implemented.

This feedback process will be accomplished through an online form which will soon be available on both PHA’s and Caring Voice Coalition’s websites. Our goal, however, is not to become only a complaint department. We want to help by empowering patients to reach out to the right people within their respective provider network, and to help all parties involved understand how to avoid repeat issues in the future.  We want to help specialty pharmacies see where their procedures are not meeting patient needs, and to also see what is working well.

In addition, this form can be used for praise and accolade. Many of us have had fantastic experiences with representatives from specialty pharmacy companies and they need to hear about this too. When we start from a strength-based model, and move forward on what works, we all benefit.

You will be hearing more about this process in the coming months. In the meantime, we welcome your feedback! Feel free to leave a comment on this blog on what you think of this new initiative, ideas you have on how it can best serve your needs, and anything else on this topic that you wish to comment on.

In closing, I would like to take a moment to thank PHA, Caring Voice, and especially the industry representatives who are supporting this process. It isn’t often that we get to see how a patient is not only heard, but responded to in such a positive and pro-active way. I really appreciate that our community is being given this platform, and with such support from all involved. Thank you!

From Orlando to Istanbul…

At PHA’s 2012 International PH Conference and Scientific Sessions in Orlando, Fla., one of our medical speakers during the Scientific Sessions was Dr. Ghazwan Butrous, a Professor of Cardiopulmonary Sciences at the University of Kent in the United Kingdom. His presentation on schistosomiasis, an infection (caused by parasitic worms in contaminated water) that is a primary cause of pulmonary hypertension in South America, Asia and Africa, is now available on PHA Online University and is well worth watching.

We have known Dr. Butrous since, as a scientist at Pfizer, he played a critical role in demonstrating the value of sildenafil for treatment of pulmonary hypertension. Today, he plays another important role as Managing Director of the Pulmonary Vascular Research Institute (PVRI), an organization of physicians with whom PHA has been developing an increasing number of partnerships.

Grand Bazaar

There are many connections between PHA and PVRI, and at the end of 2012 I got a call from Drs. Stuart Rich and John Newman. Dr. Rich is a past member of PHA’s Scientific Leadership Council (SLC) and co-founder of PVRI, and Dr. Newman is immediate past chair of PHA’s SLC and active in PVRI. They invited me to attend PVRI’s annual meeting in Istanbul to address the group on what patients want from medical research and to discuss a potential clinical trials initiative.

When I heard the question – what do patients want from medical research, I was really pleased. Here were Dr. Rich and Dr. Newman, researchers who played important roles in building this field, asking a question we had rarely heard before.

Hagia Sophia

I accepted and began developed a survey. Once it was ready and posted online, Kim Lamon-Loperfido, who manages PHA’s Patient Outreach and Services, circulated a single Facebook message to let our community know it was available. Twelve hours later I checked to see if anyone was interested. To my astonishment, 143 people had already completed the survey … and within 72 hours we had met our goal of 250 respondents. This was no small statement of interest since we estimated completion would take 35 to 45 minutes. 

Michael Gray and Briana Rivas-Morello in our Medical Services program volunteered to analyze the data and developed a detailed report and slide deck which I was able to present on Tuesday, Jan. 22, in Istanbul to the almost 200 physicians and researchers from around the globe who attended.

Topkapi Palace

The presentation was part of a symposium on the possible development of a global clinical trials consortium. Besides my presentation from the perspective of patient advocacy groups, Drs. Rich and Newman chaired sessions that included perspectives from academia, industry and government.

PHA’s presentation was well received, and we have already received considerable interest in more information from many who attended. Our next step will be to share the information with PHA’s Scientific Leadership Council so that one or more researchers can be encouraged to expand and refine it for publication. At that point, we look forward to sharing the information with those who participated in the survey, the rest of our PH community and researchers in other fields who are finding this topic of growing interest.

One thing that is already crystal clear from the survey is that patients want more information than they are getting from the research in which they are participating – and those who are not participating could be encouraged to do so with more information.

Dr. Al- Hazmi bringing the
Sometimes It's PH Campaign
zebra stripes to Istanbul

At PHA we will begin working on this and, as our information is reviewed and further developed, you will be hearing more about it.

I cannot write this without saying that Istanbul – with its long and historic blending of East and West – was a perfect place to host this global meeting. The meeting was hosted by the Saudi Association for Pulmonary Hypertension and at an evening event, I pointed out to Dr. Manal Al-Hazmi from Riyadh, Saudi Arabia, that her blouse looked like zebra stripes. She replied, “Of course, that’s why I chose it … to support the early diagnosis campaign and bring awareness to Istanbul!”

There is no question that we are all in this fight together.