Back in Oct/Nov. 2010 I was fighting with Accredo to get Nicole on Adcirca and Tyvaso. I called United Therapeutics who manufactures the drugs Adcirca and Tyvaso to see if they would help me with assistance paying for Adcirca. I was taken a back when the women I spoke to said that they wouldn't help me because Nicole is a minor and since the FDA hasn't approved these drugs for minors they didn't want the liability. The PH specialist had sent me a RX card so I would only need to pay $20 per month and even signing her up for this was a hassle because she's a minor. It turns out that Aetna (my RX provider) wouldn't honor the card and I would have to go through the patient reimbursement program. I didn't want to go through the hassle so I went ahead and talked to her doctor and he said she could stay on the Revatio since Pfizer was paying my co-pay for this. I had a good feeling that Caring Voice Coaliition would be helping me with Tyvaso.
I have a PH friend who is a peer mentor for Tyvaso (Colleen B. ) that I sent an email to basically just venting about the whole situation. I wasn't very kind about my thoughts and opinion of United Therapeutics and Accredo. For those of you who are my non-PH friends and/or don't know the history of the company it was founded by a mom whose daughter was diagnosed with PH about twenty years ago or so. My friend asked me if she could forward it to her contacts at UT and I said no problem. A couple of weeks later I received an email from a senior VP within the company when my email to Colleen ended up on his desk. He asked if we could have a phone conference between himself and two of his co-workers. I had this conference and was quite happy with the outcome when he assured me that he would do whatever he could to help the situation. A couple of weeks after this I got a call from Accredo (speciality pharmacy that UT uses) saying that if I still needed assistance in paying for Adcirca and/or Tyvaso they would be glad to help as the policy had been changed in regards to minors. I asked if this was only for Nicole and I was told "no it is for everyone". I cried when I heard this. Jay had really worked some magic to get this done to help Nicole.
At the beginning of January I received another email from the senior VP of selling and marketing at UT who said he had seen my story and interaction with Jay and wanted to discuss a "cool idea" with me. We set up a phone conference and at this time he told me that every year UT has a global meeting and they bring in someone in the PH community that has influenced the company and he said that Nicole's story was the one for 2010. He said there meeting this year was in Hawaii. I had another conference with him and the mulit-media company that sets up all their meetings. They came to our house and spent the day with us to get a sense of what Nicole's life was like and from this made a 5 min. video or so. We were told that all expenses ... airfair, hotel accomodations, meals would be paid for by UT. They even gave me a gift card to take Nicole shopping for clothes to wear in Hawaii.
They made all the arrangements but even so I had a lot of extra things to do as there were restrictions on Nicole to be able to make the trip. She would be in a wheelchair the whole time and would be on O2 24/7. This didn't go over well with her.
This has gotten very long so I will continue from here with my next installment.