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!
