Wednesday, December 11, 2013

You and your Specialty important new tool for you

Colleen Brunetti
This guest blog marks the first announcement of an important new PHA service, launched in partnership with Caring Voice Coalition. You will be hearing much more about it in Pathlight and through other channels in coming months. As with many programs and activities at PHA, this one began with one person's story and need and grew from there to involve many others.  In this case, Colleen Brunetti was that person. Here is her story...

Drum roll, please... after years of hard work, the Pulmonary Hypertension Association and Caring Voice Coalition are rolling out something that will address a challenge that has been at the forefront of patient concerns for far too long.

Introducing: The Specialty Pharmacy Feedback Form.

What is this thing and where did it come from? Well, for me, it started back in October of 2010. At that time, I was in a deep battle with my specialty pharmacy company. They were having serious issues with getting my life-sustaining medication to me as promised. And then there was the pivotal moment I will probably never forget.

At the time, I had to sign for delivery for my medications. When the meds didn't show up one day and I had to wait at home again the next day, I missed an event at my son's preschool. I was livid. I was on the phone with a department manager (having long since given up on working with the call center reps) and sputtering out my frustration. I'm usually articulate  I was too upset to be at the moment.

Then the manager said, "I understand your frustration, I'm a mom too." And in that moment I knew how much she didn't get it, and clarity returned. I replied something to the effect of, "Yes, but you are pretty well promised you will see your children grow up. I'm not promised that because with this disease I don't know if I'll live long enough! This mistake made me miss a moment in his life, and I can't get that back."

Then I hung up the phone and sobbed. To express that fear aloud was more painful than anything else I had to deal with regarding PH or the pharmacy company. It still is.

Well, we eventually got the delivery issues straightened out, and while I still lived in slight unease as I had completely ceased to trust the company, things seemed okay.

Then a new mess surfaced. I started a new medication and had an adverse reaction. The way you track an adverse reaction is simple: get the lot number and report it to the manufacturer, which is exactly what was requested by the drug maker. But as it turned out, the specialty pharmacy's distribution protocol at the time was ineffective in that they did not track such things. In other words, I had no way of reporting my adverse reaction to the manufacturer, and thus there was no way to track a potentially dangerous situation for other patients.

To be fair, tracking lot numbers at the point of pharmacy distribution is not an FDA requirement. But I would argue it should be considered best practice and done anyway especially when the medication in question has the power to save someone's life or quickly kill them if something goes wrong. And as I knew the pharmacy's competitors were tracking lot numbers, I saw it as industry standard that absolutely should have been practiced.

Every time I tried to talk to someone to deal with this issue, I got vastly conflicting information. In short, I felt I was either being lied to (probably not the case), or literally no one had a clue what they were talking about... although I do believe they thought they did and had good intentions, there was clear disconnect between information I was being given, and what was actually happening.

It would take me pages to explain what this particular battle entailed. In short, I ended up on the phone with everyone as high up in the company as I could stalk, my doctor's office wrote a strongly worded letter of protest, I filed complaints with HR for my husband's company urging them to drop this specialty pharmacy from their insurance plan, contacted the biomedical company that distributes the drug and complained, and so on.

Still, I felt I was getting nowhere. The misinformation persisted, and I never did get to report my adverse reaction in an effective way.

And then the next pivotal moment. There I was sputtering on the phone again - this time with people like corporate pharmacy managers and the head of global patient safety for a drug company. And I was repeatedly told, "You have my phone number, you call me if you have more issues." And I finally replied, "That's all well and good, but what is the next patient with problems going to do? They don't have your number. And I don't want your number. I want your company to do their job."

And I knew - even if I somehow got my own issues straightened out, odds it would help anyone else were slim. And the idea that other patients were going through this same mess was unacceptable to me.

As luck would have it, this was around the time of a PH-related conference in Boston in 2011. I was in attendance, along with the PHA president, Rino Aldrighetti. I told him what was going on, and that I was having trouble getting a certain key person to return my call. He picked up his cell phone and made the call himself - and he lit that person's voicemail on fire. My jaw hit the ground, as I had never heard a sharp word from him before, and this was an entirely new side of the PHA leader.

Rino then asked me to begin to track the time I was spending on these issues, and to write a letter to the Corporate Committee for PHA and express my concerns. This is a committee made up of representatives from many of the corporations involved with PH care, including drug companies and the specialty pharmacies that distribute their medications. I did so, and what became known as THE LETTER went out. I guess it caused a stir... or so I am told.

We have continued to do hard work on this issue in in the two years since. I have flown to PHA headquarters twice and, along with PHA staff, a doctor, and members of the Board of Trustees (dialed in by phone) met directly with leaders from one of the pharmacies. Countless emails and phone calls have gone on.

A Specialty Pharmacy Advisory Board has been launched, comprised of: a patient (me), a caregiver, representatives from specialty pharmacies, representatives from drug companies, the Pulmonary Hypertension Association, and the Caring Voice Coalition. We've discussed in detail the issues at hand, and I have been forwarding individual patient concerns to those directly involved for months.

We see issues and trends. We see areas of strength. And now, we want to hear from YOU.

Please, please, use this form to offer feedback to the specialty pharmacies. When you have an issue, be it small or large, report it. When you have a praise or accolade, we sure want to hear about that too. I continue to believe that change is best made when we build on strengths.

Your comments will be accessed regularly by both PHA and the specialty pharmacy for whom it is intended, and all entries will be tracked carefully for trends and areas of ongoing concern. I have worked really closely with these people over the last several months. I am entirely confident that those on the ground care a great deal about these issues and are making sure changes are made. The Advisory Board will continue to meet and discuss as well.

And if anything, I want you to remember... PH has dealt us a really lousy hand. But we are never victims unless we allow ourselves to be.

Three years ago as I sobbed in my driveway after slamming off my phone, I never would have dreamed that such progress and change could happen. But it has.

And now you have to use it to make it work.

 View the Specialty Pharmacy Feedback Form


  1. Tina Stiyer, RN PH coordinator at Froedtert Memorial Lutheran HospitalDecember 11, 2013 at 1:42 PM

    Thanks so much for this!!! With the new changes with insurance, generics coming out and new meds emerging, it is so frustrating dealing with all that is needed to get patient on therapy.

  2. The Specialty Pharmacy Feedback Form, this is better way to communicate and reach out our voices.

  3. Bravo, Colleen! I am in awe of your persistence and determination. You have taken a problem that many others have and figured out a way to help us all. As a caregiver, I know what it's like to hang up the phone with the pharmacy and cry. Many thanks for your work on this.

  4. Thank you so much Colleen! I read your article when I got it in email but must have had a vacation of the brain and missed the whole point. Well, today was the day for Dec. that I spent so much time on the phone with Accredo. I am just so frustrated since they have started locking me out of my regular meds until the specialty co-pay assist pays for the shipment of the the 2 drugs I get so I can pay my co-pay. I just finally get off the phone hoping something will be done and cry because it's too hard to go through this every month but then it means stopping the meds that give me life.
    Again, thank you for your work for us all and for caring. Happy New Year.

  5. Coleen, Kudos on your hard work. I did use your form to write a letter and here I will paste the content of my letter. Thank you again!!
    I would like to report feedback on my experiences so far with Accredo Pharmacy. After reading the post written by Coleen, I felt it necessary to let some positive issues be known. It is so very unfortunate that Coleen and others have had the very BAD experiences they've had. And I see that it is a great possibility that the actions Coleen was forced to take, along with all of those whom supported her and joined her on her mission, may have had such an impact that the possibility of other patients won't have to experience the nightmare she and others have had to.
    Fortunately, I have had very positive experiences with Accredo!!! Thank you all, from Customer Service, the RN's to the Pharmacists, they have all done a fabulous job in handling my medication, from the startup up through my first refill which just came today!! There was even an issue with my Insurance Company refusing to refill on the day requested saying it was too early. Accredo very promptly called me on the day before I was to receive my refill and let me know what had happened and that I'd be receiving it today.
    It appears great strides have been taken to make changes for the better for all of us patients with this horrid disease.
    Thank you Coleen for all of your hard work and to your line of support who stuck with you in order to make this happen. And hats off to the Specialty Pharmacies for making those changes.

    God bless,
    Tommie Jones

  6. I would like to appreciate you for your nice work pharmacy company

  7. My dad needs a new cane. He fell on his and bent it all out of whack. I am trying to find a NYC pharmacy that can replace his cane.


  8. Dear Rino this is a very nice bolg all the topic you discussed very informative and knowledgeable for all, and this one is your great topic with your wonderful words. It's have very much importance a specialty pharmacy in our healthy life. I would like say thanks for shear with me... keep it up and keep posting.
    Buy Medicines Online

  9. Having a broad that has a wide range of members like that is really smart. There are a lot of opinions out there to be heard. That sort of variety of folks will be able to use the information in different ways and have different perspectives. I hope that they can learn a lot and be able to give back to the community.

  10. Is Pharmacy charging another person's credit card?
    Specialty Pharmacy

  11. Thanks for the information you share it about the health I really must appreciate your work.
    Kamagra Hrvatska