9.10.2008

spilling my guts for the President/CEO of Questcor

Mr. Bailey,


I did receive your recent email with the offer to speak about our journey since Trevor's diagnosis. I chose to take some time to think it over & to seek counsel from trusted friends. The feedback was mixed...as were my emotions. And in the end I never arrived at a peace point in my core. I did not mean to leave my answer hanging. I just wasn't ready to move forward one way or the other.


But during these ensuing weeks a conclusion has been drawn for me.


We had been seeing some questionable movements from Trevor. So mild even the doctors were not convinced. But I have learned to trust my instinct...and pushed for testing.


I spent every moment of this past week hoping with each beat of my heart that this time my instinct was wrong. That Trevor's Spasms had not returned. But...as I know you are already aware...a VEEG confirmed our worst nightmare. For the second time in his 17 months of life we are holding our broken baby boy. With shattered hearts. And unrestrained tears.


During the conference call with investors the evening of the JEC hearing you publicly shared that my testimony profoundly moved you. I have heard that you even played-back my testimony for your employees. Changes were promised. Changes that would help parents navigate through the pain of IS & gain access to your medication quickly. You celebrated Trevor's quick response as a success for your company.


But while you were busy proclaiming success we could not assume the same care-free feeling. We have lived each day since Trevor's diagnosis with the breath of the IS beast on our backs...just like every other family affected by this disease. Knowing that at any moment our son could fall prey to this devastating disorder again. The odds of 20-25% relapse mean very little to a parent whose child has already suffered a rare disease. And this week proved exactly why.


Allow me to share my second experience with your company...


September 8, 2008 - I received a phone call from a young man representing Questcor's Acthar Support & Assistance Program. The very first question (and frankly...only) was regarding gathering insurance information. There was no empathy. Not even a scripted "I'm sorry your family is going through this". It was all business. And that business was making sure our insurance (which is State Medicaid btw) would be footing the bill for Trevor's treatment. In fact, I received multiple phone calls making sure the correct ID numbers were given.

Late that afternoon he called to inform me that the case was still in the works.

And as of 3pm today September 9, 2008...we are yet in a holding pattern. I have not received any phone calls from Acthar yet today. Although our nurse called afraid that perhaps she had done something wrong to delay the process. I assured her that the process should not be so complicated that she would even have to entertain that thought! At this point I doubt we will receive Trevor's treatment by tomorrow? And even should it arrive tomorrow everything will still be delayed until Thursday because we need to make arraignments for a home nurse to be present. That will make it at least four days & 160 seizures from submission to injection.

Which leaves me with a very sour taste in my mouth. Similar to the taste I experienced about 8 months ago.

I am convinced we will never agree on the price point of ACTH. I readily admit my bias on the matter. And acknowledge that your experience on this issue undoubtedly exceeds mine. In fact, I can sooner converse in Swahili than understand the many complicated layers of this issue. And yet Providence has directed that we each have our horses in this race. Mine just happens to be a beautiful baby boy.

But there are certainly some areas outside of pricing with which I take issue...

I recently read a statement made by you stating that insurance denial is rare & that NORD is picking up the tab for the families who either do not have insurance or are denied coverage. Of course, again my objectivity is skewed by our personal battle with our insurance company during Trevor's initial diagnosis.


But if it is true...and if you are indeed committed to making sure that every child in need of ACTH will get it...than I am having trouble understanding why the first priority is ensuring that insurance will be covering the bill? I cannot wrap my mind around why...in a situation as dramatically tragic as IS...your company cannot find a way to ship the drug & work out the payment arrangements later? I have been told that other drug companies have done this. With drugs less vital than ACTH. And you have emphatically stated that insurance denial is rare & that no child will go without this drug due to Questcor's "generosity".

And so it seems to me the attitude at Questcor is: Payment arrangements first - vital drug to desperate child after.


Again...I'm feeling the need to wash the sour from my mouth.


You argue that if the drug were not priced where it is today the company would go under...and ACTH would no longer be an option. This of course is not my intent. My issue has never been with the drug...but rather with the pricing & accessibility. I know first-hand that ACTH can provide a miracle.


And Questcor investors were quick to point out - $25,000 to cure her kid & she's complaining!


Correction...that would be $25,000 PER vial & as I testified Trevor's course required 5. So in actuality the bill tallied to over $125,000 for the 8 months of seizure freedom Trevor was given. But he was not cured. And yes I am complaining. Or rather...advocating.


I am advocating on behalf of the IS community as a whole. I am advocating for all the beautiful baby boys & girls afflicted with this disease. And those yet to be diagnosed.

They deserve access to this medication. Immediate...affordable... access. A little over "two day" turn around for your company is too long for a family holding a seizure ridden baby.

I am imploring you...look into the eyes of my son.

His beautiful eyes. Eyes that represent every baby living with Infantile Spasms.





Look into Trevor's eyes & prove that you care. About him...more than the bottom line.

Prove it by making the turn-around time less than 24 hours from submission of paperwork to receipt of the medication. Every time. Prove it by spending more than 13% of your company's profits to fund Research & Development. Invest more on finding a cure for Infantile Spasms than you do on employee wages. Prove it by under-writing projects like the Epilepsy Phenome-Genome Project which is in progress right now.

I have been told that you are a generous...kind-hearted...caring man.

Now I'm asking you to prove it.

From the heart of a mother...

danielle foltz

12 comments:

Jarret said...

Very well written, and extremely to point and heartfelt.

If the guy can't see the big picture he is blind...I hope and pray he will respond, and this time follow through.

By the way, I am using the picture from this post for my presentation next week...

Love you guys.

Anonymous said...

I am amazed that you, of all people, are experiencing these delays. My son's growth hormone was sent free of charge until insurance approval was obtained.

The fact that they have been following Trevor's experience and didn't make sure this was handled properly just proves that they shouldn't be running a business. It's just incredibly stupid on their part. I hope Trevor gets properly treated soon.

Erin

JSmith5780 said...

Ok, posted on my blog... emailed to the groups. Now we just wait and hope for ONCE Don Bailey is listening... listening as a human and NOT a business man.

Anonymous said...

What a good letter-- I am so happy you are an activist and maybe you will be a help to others in the future. This whole thing is sooooo heartbreaking for me as his Grandma.

I Love you,
Mom

Abbe said...

i am so proud of you... and this letter! your strength in the face of adversity continues to inspire me. and hopefully questcor listens up! they should know by know who they're messing with. :) praying for trevy and all of you.

abbe :)

About Us said...

Danielle,

I'm so sorry that you are again facing these battles - more spasms, more red tape, more frustration.

I would add to your letter that when the cost of ACTH was not an issue, it was delivered with relatively little delay and certainly less frustration.

We received our ACTH in August of 2001 in 3 days. One day to order, provide insurance info, submit a letter to NORD indicating the need, a day for them to fulfill the order, and it was on our doorstep the third day.

I call bullshit on Mr. Bailey's reason that the price was increased to keep Questcor afloat. The price was increased to make Questcor ridiculously profitable. And the fact that these record profits are at the expense of suffering children, desperate families, and eventually all of us as taxpayers is unacceptable.

Keep your faith, Danielle. You are living proof that the fight never ends. I honor you and will do all I can to be with you in this fight.

Best,
Kisa

JSmith5780 said...

oops... one post turned into three.

http://blogs.timesunion.com/austinbenconnor/?p=1031

http://blogs.timesunion.com/austinbenconnor/?p=1032

http://blogs.timesunion.com/austinbenconnor/?p=1033

Ok, I think I have it our of my system for now :)

LISA EMRICH said...

Wonderfully written letter Danielle. You are such a strong advocate for IS children and the IS community. I'm sure that you will let us all know exactly how long it takes until Trevy gets his first shot this time around. I'm thinking about ya'll.

~Mama Skates~ said...

u'd think that jackass would hand deliver the stuff to u himself by now!!! GREAT letter - very well written - again, ur strength amazes me! hang in there!

going to post this to my blog now...
sharon

Anonymous said...

What a touching letter, I can only pray it doesn't fall on deaf ears.

Personally, I would encourage as many parents as possible to use synacthen instead of the Acthar Gel.
It makes my gut wretch how this company gets away with exploiting other peoples children.

God Bless you all.

Monica, James, Connor McGuire said...

Bravo!!! I tell you what your strength & way with words blows me away. I want to personally thank you for being an advocate for all of our children. I don't have enough words (nice ones atleast) to tell you what i think about Questcor. Companies like that are what is ruining healthcare in this country. Companies like that make me disgusted to be a healthcare professional. Ugghh...I bet if it was his child he wouldn't be having to go through all of this red tape while you are having to count the days your child goes without treatment. Hang in there...something good is bound to happen. M~

La Familia Garcia said...

Way to go! You are so great with your words and clear to the point.