Tuesday, February 19, 2013

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...

Colleen BrunettiToday 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!


  1. The Specialty Pharmacy I used until Humana mandated that the 10 mg Letaris tablets be obtained from their selected pharmacy, Right Source was Caremark, a CVS specialty pharmacy. I never had a problem with them. They would call me to determine if I was ready to refill and would have the medication to me the next day via overnight delivery. Their number is 1-877-242-2738.
    Now, for a complaint. On January 12, 2012 the price of Thirty(30)10 mg Letaris Tablets was $4,556.48. I paid a co-pay of 25% or $1,139.12. On February 4, 2013 the price for the same amount of medicine was $6,795.56. I paid a co-pay of $1,698.89. That's a 49% increse in price. What comments do 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.), have to make. I have tried to apply for monetary assistance but I our family income is a bit too high.

  2. Colleen--This is great! Thank you for spearheading this.
    Not sure this is the kind of comment you're looking for just yet, but I will say that it's frustrating to place orders with Accredo and spend 15 minutes (only a slight exaggeration) answering the same questions each month about things that it seems could be better handled by having all the patient info in front of the person taking the call.

  3. Hi Colleen,

    Sounds like you're taking on a big challenge! I've spent the last 10+ years dealing with specialty pharmacies, more than one! I agree that the process is cumbersome and repetitive and at time invasive. I wish that some of the monthly questions could be answered online rather than over the phone. At times I have to make these time consuming refill calls when I'm at work and I don't always have a private place to do this. I could go on but I won't - thanks again for taking this on!

  4. Colleen, Thank you so much for taking the initiative on this! My specialty pharmacy is CVS Caremark and I must say that I have been very pleased with my service. That said, I am on several Facebook support groups and have heard the horror stories from other patients. I think this is a wonderful idea and very over due. Thanks again!

  5. I too use CVS Caremark and have had a good experience with them. I receive an automated call every month letting me know it's time for my meds to arrive and if there is a change in my address I can call the number listed. Every few months a nurse will call to see how I'm doing on the medicine. I've never had a negative issue with them.

  6. I use CVS Caremark and have had no complaints. My medication arrives on the day it's supposed to. I have also use Kaiser Specialty Pharmacy in the past and had no problems with them either. Both pharmacies call to check when refill is needed and meds arrive on time. This is a wonderful idea for patients who do have problems.

  7. A very interesting happening today. I was waiting for my Accredo delivery which was to come today. It always comes first thing in the morning. That was good as hubby was off today and we were going to do some banking and other errands. But the UPS driver didn't show up like he usually does. So I checked the email that I had received to see where it was in the delivery process. It only told me that my order was "on the truck" so we waited... and waited... and the bank closed... and at 5:40 PM the truck arrived, my regular driver. So I said to him something about being much later than usual. He told me the order was changed from "Overnight next day delivery" to something else that let it come anytime during the day of delivery, which just depended on the rest of the driver's schedule. He said the charge for that is much smaller. Well, what do you know! Someone finally got smart! I know Accredo is trying to do things cheaper and I really think this should have been done all along. But I also think a heads up to us waiting for a delivery would have been nice. They had never told me how they shipped... just what day it would arrive. Next month I guess I won't be making any plans that entire day.
    Thank you for this work you are doing. It's very enlightening! LR

  8. Amen. It's about time. Where was this 5 years ago - I could have used some support. As you say, some things are done well but some things VERY bad! I had some horrible experiences with my former specialty pharmacy. I now have a different one as well as a different medicine and I really don't have any complaints.

    I think this is great and I look forward to this coming to fruition and hopefully participating!

  9. Thank you, Colleen, for taking this on. In 7.5 years I have had UHC insurance and Accredo for my pharmacy and they were both AWESOME!! Now, my husband's insurance changed to Anthem Blue Cross at the same time Express Scripts bought everyone out. My Medco changed to Express Scripts and they let me run out of my bumex, even though I called two weeks prior to reorder. Accredo switched to Curascript, which let me run out of my letairis last month for 3 days. This month it's an insurance issue- they won't release my letairis order until 5 days before I run out....and it still has to be shipped! This is too close and I have appealed. These insurance companies need to release 10 days to 2 weeks ahead so we get our meds in plenty of time. I sure hope this new committee can do something. Thanks so much, Marcia Beverly

  10. I use CVS Speciality Pharm. and they have been outstanding. I receive 3 months at a time and they always call me to refill. They have always delivered on the date they we agree upon. Maybe by sharing our positive comments, other Pharm. will listen and step up to the plate. Thank you for starting this blog.

  11. Colleen,
    Thank you for creating this - great idea. I have noticed a number of people having problems getting their specialty meds since Accredo was bought out. I have been very lucky. Accredo has always been so good to me and everything has gone right. One of their pharmacists actually saved my life a few months ago by calling my doctor when I wouldn't (stubborn) and I ended up in the hospital. I am still getting my Revatio and Tracleer from them. My Remodulin is coming from Caremark and they have been right on time so far. I received my forst box from them and it was full of supplies and even a bag to carry my emergency Remodulin supplies. So far things are great on my end. Hoping with a little time everyone else will get their supplies on time. That is a scary situation to be in.

  12. It seems Colleen's blog has brought a great response. Hopefully, this new partnership will help create a growing and productive conversation with industry.

  13. Colleen:

    This is such an awesome idea. I am so glad that this is coming about. I have had Accredo for the majority of the last three years and for the most part the problems that I have had are not always Accredo's fault but some of it must lie with the insurance companies and/or the healthcare provider (ph specialist).

    Jane ~ mom to Nicole, 18 yo
    VSD: ventricular septal defect
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    PAH: pulmonary arterial hypertension
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    GAD/OCD: generalized anxiety disorder/obsessive compulsive disorder
    "You're braver than you believe, and stronger than you seem, and smarter than you think."
    Find me on facebook at jbones1961@cfl.rr.com
    Look me up on twitter at phmomma21
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  14. My family has found a really great specialty pharmacy to help deal with my brother's illness. They have been total lifesavers, literally. They offer great service and can provide specific assistance regular pharmacies can't. I support them wholeheartedly.

    Jane Fairfax | http://www.newlondonspecialtypharmacy.com