Big News. Really, Really Big News!

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 e-mails 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.


It is here: The Specialty Pharmacy Feedback Form

Meet Justin: When Giving Back Also Inspires

The final installment for 2013 for PHers who inspire... the previous editions are HERE

Justin is a recent high school graduate with a story to tell. This past June, I was lucky to hear that story first hand.  It is a story of incredible ups and downs, of defying the odds, of uncertain times, and of triumphs.

Born in Colorado, Justin is one of triplets, and he also has Down syndrome. At birth, the family learned he had pulmonary hypertension. 

Surgery

As can be common with Down syndrome, Justin underwent open-heart

surgery at just four months old. Because of complications, he spent a subsequent five weeks in ICU.

By age 2 ½, Justin was on oxygen constantly. Doctors told his family that the elevation in Colorado was too much for him, and that the family must re-locate somewhere closer to sea level. They chose Connecticut, within distance of Dr. Robyn Barst at Columbia in New York City, and that is when Justin’s journey with pulmonary hypertension really began.

Dr. Barst was the preeminent physician addressing pulmonary hypertension at the time, for the general patient population, but especially with pediatrics.  Justin and his family went through a lot as they tried to fight the disease, and Dr. Barst was with them every step of the way.

Justin has had two pace makers and been on many PH medications. For a long time, Flolan saved his life. Being a child with a backpack that carries a pump attached to an IV into your heart is not easy by any stretch, but Justin persevered for 12 years. The family tried him on Remodulin too, although that was not as successful. Then, on a second attempt with Flolan, Justin hit a critical point. The drug is extremely powerful, and it can also be extremely toxic. For Justin, this meant a severe drop in platelets, which led to lung bleeds, amongst other multiple complications.

And then, the miracle came for Justin. An inhaled medication called Tyvaso had just hit the market, and it was decided that Justin should try it. Tyvaso, combined with Adcirca, turned things around. Justin’s health started to improve. He competes in the Special Olympics – and medals. He graduated high school in  June 2013, and is now in a transition academy. His parents tell me they hope that someday he will attend college.

So, when to everyone’s happy surprise, Justin reached his senior year in high school and the time came to choose a senior project, Justin chose “Giving Back to the Organizations that have Shaped My Life”. He chose the Pulmonary Hypertension Association and The Special Olympics.

Fundraising

Justin worked tirelessly on his project. Two bake sales, and a pasta dinner, were all smashing successes. Through his efforts he was not only able to raise money for causes so important to him (an impressive $3,000 in total), but he was also able to spread a great deal of awareness as well.

I didn’t get this story from an adult well versed in medications and PH. Justin told it himself. As I sat in an auditorium at Shepaug Valley High School, I don’t think I ever stopped smiling or shaking my head in wonder. Justin is a remarkable person. He had clearly put so much into his project and presentation, and presented it with a level of articulation more seasoned speakers can lack. And I would be remiss if I didn’t mention that he gives the best hugs too.

 

He told his whole medical story with such fineness. His pride in his accomplishments beamed through, as well they should. Justin has defied every odd. He works to give back to the communities that supported him in his fight. We can all learn a thing or two from this remarkable young man.

Justin presents me with the check for PHA

Justin's Family: Sister Lindsey, Justin, Dad Russ, Mom Lori, and Sister Jenni

In closing, the funds Justin raised for the Pulmonary Hypertension Association will go to the Robyn Barst Pediatric Research Fund. As Justin said, “ Because of Dr. Barst and her incredible work I am alive and able to graduate! Thanks to Dr. Barst, I and thousands of others with PH are living longer and better lives. She is gone but her work will live on forever!”