I'm a Vertex Ambassador

[miked]

Hi Guys,

To those who don't know me;  was a geno 1b with almost zero liver damage.  

Failed first tx with SOC because of a viral breakthrough at week 32.    

Studied my options and got into Vertex Prove 3 trial in 2007.  Luck got me into the trial arm that received VX-950 + INF + RBV for 12 weeks followed by 12 weeks of SOC.  I went to zero week 1 and have been that way ever since.  SVR baby!

Dr. Paul Kwo of IU Medical Center in Indianapolis was my hepalogist  for the Prove 3 trial.  Paul is the most fantastic doc who treated me as a partner in my tx and I consider him to be a friend.  He recommended me for the Vertex Ambassador Program.

After some thought and questions to Tammi at Snow Consulting who Vertex engaged to run the Vertex Ambassadors program, I decided to participate.  Tomorrow I travel to Cambridge, MA for a weekend of Ambassador training.

My only motivations are to pay back to the HCV community....hopefully someone will hear my stuff and decide to go for screening earlier vs. later.  Telaprevir stopped this nightmare for me and I hope so many other people can benefit from the drug.  

I also hope Vertex makes a gillzillon dollars from their work.  I don't feel exploited one bit to help get their message out.  Someone asked about Vertex payment....they are fair to cover your expenses and offer a small fee ($200ish) to drive 300 miles to speak...money is not the reason to do this for sure.

Additionally I have a son with Cystic Fibrosis (CF).  Ironically Vertex, who invented the drug that saved me also has two very promising small molecule compounds that are in Phase 3 Clinical Trials for Cystic Fibrosis!  I'm hoping this experience will put me in contact with Vertex people with experience with their CF drugs.

I promise to post what's going on with the Vertex Ambassador Program here first.  If you guys have any questions please ask away.  I'm excited to help the HCV community.

Take care,

miked

[frijole]

I think you will make an incredible ambassadore.  I will be curious to know exactly what your role is  - what is expected of you and if you will be speaking.... or dealing with patients.  I hope the conference is beneficial.
friojle

[RobertBeWell]

Does this mean you have diplomatic immunity? If so, pls call me.

:-)

Seriously, glad things worked out well for ya bro. Keep on keepin' on.

[fretboard]

"Failed first tx with SOC because of a viral breakthrough at week 32".    

"Studied my options and got into Vertex Prove 3 trial in 2007.  Luck got me into the trial arm that received VX-950 + INF + RBV for 12 weeks followed by 12 weeks of SOC.  I went to zero week 1 and have been that way ever since.  SVR baby"!
__________________________________________________________________
Ouch, to the top sentence and yea to the bottom part!!  Great success story!!  Glad to have you representing us heppers and helping out the HepC community!!  WTG!!

[miked]

Hey, great to hear from you guys again!  

Hope all's well with you and your families.

[can-do-man]

Great to hear and glad your doing well, we were in different trials, different drugs but had the same doctor and the same outcome.......... Just don't recommend anymore cars to Kwo.  :)

Best to you,
Cando

[Magnum]

Best of luck staying cleared...

Magnum

[miked]

Hi Willing - I don't think the next few days will be getting into technical questions about Vertex and its compounds (we'll see).  The agenda I've seen is that they will have professional writers work with us to document our stories about HCV and SVR.  There will be a tour of Vertex HQ and introductions to key people so I'll see what can be asked.

Debby - Hi buddy!  I was actually hoping that you would be here too.  You'd be great at the job and I would have liked to meet you in person.  My kids are 18 and 16.  The 16 year old is a straight arrow, the 18 year old...well I'm sure he's doing those things anyway.

I'll let you guys know how this goes.

miked

[banarep]

that is great news.  how can I become one.  I, too, am a walking billboard for vertex.

[nygirl7]

Mike that is great great news on all counts.  I have a nephew with CF and a daughter that they thought had it as well so believe me......I know how important a drug that one is, just as or if not more important than hcv drugs even (heck the kids dont give it to themselves like I did with hep).

I was going to call to be an Ambassador too but realize my 20 year old son would have run of the house for four days - and heck I'd come back to nothing but beer kegs and bras everywhere most likely, if  the house was still even there at that point.  

I think it's a really great thing and am glad you are a part of it. Especially since you are now SVR thanks to them.  :D

It's great to see you pop up here; however, I am glad you are so busy out living a great life that you dont have time to come here often.  That is why we do treatment after all isnt it?

All my best to you, Always,
Debby

[willing]

sounds like a good program. Let's hope Merck/Roche/BMS follow suit. It would be great to see a little more dialog between patients and pharma.

Sounds like you're off to Boston already so you may not see this but if there's a QA session here's a couple :

1) What was the SVR rate in ILLUMINATE among those who did not qualify for shortened tx randomization (no eRVR in about about a third of pts)?

2) Why were the final results from REALIZE not presented at AASLD though preliminary data was given in the August press release?

3) What recommendations do they have for mitigating the 17.4% discontinuation rate seen in ILLUMINATE?
thanks!

[miked]

How you doing!!??  It's so good to see your comments again.

I know that I'm a schmuck but I've been off raising kids, loving my wife, working...living life.  I've not stopped by here for some time.

Things are good for me.  Please send me an in-mail about what you are up to, OK?

Is Susan400, NYgirl, FLguy, Jim...still on this board?

I'll keep you posted how the Ambassador program goes.  I'm about to board the plane for Boston right now, gotta go.

miked

[Willy50]

How great to see that you got this Mike!!  Great choice on both your and Vertex's part.

If you are ever in my neck of the woods doing a presentation let me know.  It would be a fun thing to see you at work.

It's great to have a member with a connection to Vertex.  keep us posted and have a great weekend in Cambridge.

Willy

[SusieS2010]

Great news Mike, on all accounts. I remember when Vertex was considering the Ambassador program. It's great that they decided to do it. I hope their CF drugs will be just as successful as Telaprevir seems to be. Enjoy your time in Cambridge. It is a fascinating place.

[HectorSF]

miked, congrats on your SVR. Glad you'll never have to deal with extensive liver damage.

I'm sure many here will have questions as Telaprevir approaches being released on the market.

Keep up the good work.
Thanks for sharing and helping others!

hectorsf