Senate Hearing to Examine Specialty Drug Price Increases

The following meeting will discuss the 15-fold price increase of H.P. Acthar Gel (ACTH) by Questcor Pharmaceuticals as implemented in their Orphan-Drug-Style-Pricing-Model Strategy in August 2007.

I previously wrote about Questcor's new strategy (see tags on sidebar) as Acthar is indicated for the treatment of multiple sclerosis exacerbations, although the majority of MS patients use IV Solumedrol to hasten the recovery from periodic flairs. I have offered to summarize my research findings into a single post for one of the witnesses who will be speaking at the hearing.

So I've got some work to do.

SMALL MARKET DRUGS, BIG PRICE TAGS: ARE DRUG COMPANIES EXPLOITING PEOPLE WITH RARE DISEASES?

Americans Suffering From Rare Medical Conditions Also Burdened by Mounting Costs of Specialty Drugs as Pharmaceutical Companies Increase Prices Over Tenfold for Patients Undergoing Treatments for Serious Diseases Like Cancer and Epilepsy

Joint Economic Committee to Examine Sharp Price Increases for Expensive Specialized Drugs and the Impact on Consumers, Hospitals, and Care Providers

Washington, D.C. – U.S. Senator Amy Klobuchar (D-MN) will convene a hearing of the Joint Economic Committee (JEC) to examine the skyrocketing prices of certain prescription drugs and the impact on the pharmaceutical market, hospital’s budgets and patient’s medical bills. The hearing entitled, "Small Market Drugs, Big Price Tags: Are Drug Companies Exploiting People With Rare Diseases?" will be held Thursday, July 24 at 10am in Room 106 of the Dirksen Senate Office Building. Senator Charles E. Schumer, Chairman of the Joint Economic Committee, has been a staunch advocate of lower priced drugs and a competitive pricing market. The panel of experts will explore causes of recent price increases for treatments for rare diseases and the negative impact on affected families’ fiscal stability and access to care.

WHAT: Hearing: "Small Market Drugs, Big Price Tags: Are Drug Companies Exploiting People With Rare Diseases?"
WHO: Madeline Carpinelli, Institute for Pharmaceutical Research in Management and Economics at the University of Minnesota
Alan Goldbloom, CEO of Minnesota Children’s Hospital
Danielle Foltz, Parent of young patient from Rhode Island
(Additional witnesses may be added)
WHEN: 10 a.m., Thursday, July 24, 2008
WHERE: Dirksen Senate Office Building, Room 106

The Joint Economic Committee, established under the Employment Act of 1946, was created by Congress to review economic conditions and to analyze the effectiveness of economic policy.
www.jec.senate.gov

Watch It, Smartie Pants

[Begin reading my story with Eyes in the Back of My Head]

Last week I learned that one of my former horn students graduated college and is engaged to be married. Wow. I thought he only graduated high school just three years ago. True. He graduated college in three years....the overachiever.

Brian began horn lessons when he was in 8th grade, 8 years ago. He was the type of student who resisted rote learning and avoided repetition much to my chagrin. Brian preferred to intellectualize everything.

By the time he hit high school, he was bold and confident. One of his 'endearing' traits was to correct you if you spoke incorrectly. This served to highlight the oddities in my verbal skills which had increased in recent years.

Even as a teen, I would transpose syllables within a word or between two different words, often jumbling it such that two nonsensical words emerged. It wasn't until Brian that I became aware that I was frequently substituting words completely. The only connection which seemed to be present was that the new word often started with the same letter as the correct word.

This little oddity almost went unnoticed as long as I kept going in the conversation and didn't pause. Until Brian....

He would stop and correct me, providing the correct word. My interrupted response was usually along the eloquent lines of, "What?"

"You said measure and you meant metronome."

"Well, ok. You understood what I meant. Let's move on."

This continued through the years 2000-2005 until Brian graduated high school. These years also correlate with the time between a major optic neuritis attack in 2000 and the eventual multiple sclerosis diagnosis in 2005.

Sometimes Brian and I would circle around the correct pronunciation of a word. Take for instance the word - respite. I preferred: \ˈres-pət\. Brian insisted that was I incorrect and that it is: \ri-ˈspīt, or ˈres-ˌpīt\. It's very silly, but we circled around this difference for minutes. He thought that my Okie roots had corrupted my pronunciation skills.

Brian also would complete my sentences for me if I paused for just a moment. Often he was correct but sometimes he guessed my thoughts incorrectly. It was hard to fluctuate between not wanting him to "put words in my mouth" and resorting to "you know what I mean."

There have been other students to 'help' me along but Brian is the most memorable. It is somewhat common that MS patients experience changes in cognitive function and verbal fluency. I am special in that I have several human barometers who reflect my verbal deficiencies right back at me. Often we laugh about it and students get used to me asking, "does that word look right to you?" when I have trouble spelling the most common of words.

That's what this journey through life with multiple sclerosis requires - laughter.

Next Up:  The Mermaid in the Pool

Restaurants Expanding Choice

The New York Times has an article regarding restaurants on Long Island offering gluten-free items on their menus. This is an excellent move by the restauranteurs to serve the needs of customers with celiac disease and other wheat sensitivities.

I've not tried much gluten-free food as a replacement for wheat-based items, but I would try such a thing if given the option while eating out. This seems like a smart move to me and hope that other restaurants follow suit.

Many patients with multiple sclerosis find that they feel better when following a dairy-free and gluten-free way of eating, as is presented in the second news article below. It's nice to know that options are increasing.

Restaurants Offering Gluten-Free Options

By CAROLYN NARDIELLO

Published: July 20, 2008

A growing number of restaurants on Long Island have added gluten-free dishes to accommodate customers with celiac disease.

Going gluten-free -- for many reasons
By JANET CROMLEY, Los Angeles Times Staff Writer
Published: July 7, 2008
Diagnosed with celiac disease, or self-diagnosed. Sensitive to foods, or related to those who are. The gluten-free diet trend is getting a warm embrace.

Carnival of MS Bloggers #15 - Mood Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Shauna of bugs, bikes, brains starts us off with What Makes Me Happy.

NH=Not Happy and H=Happy.

NH: waking an hour or so before the alarm clock goes off.
H: hearing the loons at a nearby lake at 5 AM.

NH: getting my boots filled with water at a river clean up
H: the river clean up

NH: paying bills
H: that I'm able to drive, work and shop

NH: the clothes I just bought a week ago are now too loose
H: I'm losing a little bit of weight

NH: neuropathic pain:
H: maybe it's continued re-myelination

And this is where I got stuck. I can't think of enough things that make me not happy to continue in this vein (which is something in itself to be happy about) so I'll instead list the things that make me happier.

Here's where you venture over to Shauna's blog to read what makes her happier, then hurry back here to finish the rest of the Carnival.

I particularly enjoyed the following comment left at the above post:

"Even if in a somewhat "bad" mood when I arrive at your blog, I always leave a wee bit "happier" after reading it! You really ARE a genuinely good-natured and delightful soul...and since happiness is found within, I doubt you have to look very far for yours...thanks for your posts and pics." - Linda D. in Seattle

Jen who blogs at MSfriend discusses a Foul Weather Mood.

On this topic, I have to admit that I’m a somewhat moody person. Just like the weather, there are days when I feel sunny and temperate, brisk and aloof, cold and not open to conversation, misty and sad, and hot and volatile. Doesn’t everyone? I like to think that I’m not the only moody person out there, and I do have a way of reigning it in when situations call for it. I think over the years I have learned to better control my emotions when I need to—- something challenging for fiery Aries people who pretty much wear their thoughts and emotions on their sleeves. Nevertheless, I try to make a conscious effort to keep calm and not overreact.

Read the rest of Jen's post here.


Nadja, the Denver Refashionista who is Living! with MS, shares the following -

Your feelings are your feelings, like it or not. In yoga, we try to train ourselves to be free of judgment yet often, we are our own harshest critics.

I am beating myself up. I can’t seem to stop. It is a compulsion. Every day I read blogs by other MSers and I see just how good I have it and still, I feel sorry for myself. That leads me to anger. Who am I to wallow in a mood or a symptom when someone else has it ten times worse?

My mood is black. It has been for several days. I can’t stop the pity party but I feel guilty for feeling this way. I feel completely bowled over, like I can’t function at all. Under the strain of night after night where I cannot sleep because I hurt, I am cracking. I can see the fissure. I remind myself of worse times where I learned that breath can rescue one, even from the abyss, yet I cannot seem to change my own mind.

I am being torn apart. It feels awful to be so exhausted and overwhelmed. When I was first diagnosed I learned it was ok to just chill. I learned to accept myself and others… Now it seems I am regressing. Breath isn’t enough to make me forget the pain. It doesn’t help me sleep. My mind is not growing calm. I am being destroyed by the notion that I should be doing more. I shouldn’t just sit around. It’s not ok to just scream and cry and still produce nothing.

I am haunting myself. I know these ideas are not coming from elsewhere. My rational mind knows that it’s ok to rest or to just lie around but a part of me will not accept this. I don’t feel better until I have gone to yoga, cleaned house, written and done some homework. Why can’t I escape this insanity? I am always telling others that being present has saved me, that I no longer do things I don’t want to do but I have trapped myself into believing that I am nothing if I am not doing something. Yoga teaches us to “be” and I can’t seem to just be.

When I was sick I was fueled by steroids and mystical experiences. My creativity knew no bounds. Now it is being sucked from my depths as I slowly drown in a sea of self-pity. Is this hormonal? Absolutely. Will I be swept up again in a few weeks? Almost undoubtedly. When I see my future with two weeks sliced out of every month to convalesce, I’m scared. How will I manage when I have to work again?

I like to conclude on an uplifting note but I do not feel uplifted from writing so I will conclude by restating my intro, “Your feelings are your feelings, like it or not.”

This concludes the 15th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on July 31, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 29, 2008.

Thank you.
Comments for this post.

Knock knock. Who's there?

Pharma. Pharma who?
Pharma's a-callin' and wants a word with you.


OK, so it's not the best knock-knock joke. My nephews can come up with much better. But it's not a joke.

Tomorrow morning I will be calling, directly mind you, the CEO of a pharmaceutical company of which I spoke recently. I've created some questions and collected a few from readers like you.

If after reading up on the previous posts regarding Fampridine-SR you have a question or two, please leave them in the comments section.

Thanks.

Just a quick note. I will share my thoughts regarding the 2 1/2 hour phone conference soon. Just need time to collect my thoughts, while I'm also working on new segments of my own story.

Take Me Out To The Ball Game

Take Me Out With The Crowds.....

Wait, I don't really like crowds. But I did go out to a ballgame yesterday.

Here in DC, the Washington Nationals has a new ballpark and this was my first opportunity to see it firsthand. Friends of ours are in a unique position with access to season tickets to various sporting venues around town. This is due to changes in the lobbying laws which now prohibit treating business associates and congressional employees to entertainment events.

Another group of friends decided to join us and purchased tickets in the adjacent section. Fortunately for me, their seats were a little higher up and in the shade. I managed to work myself into a seat with them instead of sitting in the direct afternoon sunlight along the first base line.

I was actually nervous about going. See- my legs sometimes become 50lb logs, while they are also as flimsy as a marionette's legs, after a good walk. I'm going to have to break down and purchase my own cane someday. I've borrowed my Sweetie's mother's cane on a few occasions, but at times like yesterday I usually take my Sweetie's hand and that provides me with some of the support I need, both physically and emotionally.

One wrinkle in our master plan came when our friends tried to help us out and make our day easier. As we were getting stuck in heavy DC traffic, I called one of the friends who had a 'sounded great at the time' plan to have us park somewhere and they would pick us up. We had planned on parking near the L'Enfant metro station and taking the train to the ballpark which is only two stops away. Their tickets included a parking pass in one of the lots at the stadium. It turned out that their designated lot was at least 3 blocks from the entrance whereas the Navy Yard metro station is only 1 block away.

By the time we reached the stadium entrance, I was more than ready to sit and rest. My legs felt weak and when I closed my eyes for a bit, I was weeble-wobbling. We rested a little in the shade while waiting for one of the group to go gather some goodies for the game. Then we proceeded to walk at least 2 blocks around the seats to find our section only to be presented with the overhead sun. I saw our other friends and stated,"I want to sit here next to Zoe." And so I did.

Funny thing with MS and symptoms, they tend to come and go frequently and unexpectedly. By the time I arrived at the stadium, I felt as though my legs were done for. I could no longer feel them and was concentrating very hard not to trip with my right toes dragging. But after a little rest in the shade while waiting for the one guy, I was able to walk much more easily to our section. I found the flow and glided.

Now before you go thinking that I am completely crazy to subject myself to such a challenging situation with the heat and all, I brought along an MS survival kit of sorts. I packed a soft-sided thermal bag with several blue ice/gel packs which I received from MSAA (Multiple Sclerosis Association of America) and their cooling program. I left the flack-jacket at home, choosing to go the individual ice pack route. Also included in the bag was a larger frozen pack which had been used to keep my Copaxone injections chilly during delivery. This frozen block made sure that the others on hand stayed as cold as possible.

Also included in my all-important survival kit was a fan. It only measures about 4" squared, but this battery-operated fan was an absolute necessity. It was a Target clearance rack find at the end of the summer season just a couple of years ago. The cost was less than $2, truly a bargain. I used that fan on myself throughout the game in addition to strategically placed ice packs. I managed to stay reasonably comfortable during the game with the help of these and some cold refreshments.

The Washington Nationals were losing to the Houston Astros for the entire game, so we decided to leave during the 8th ending. At first I felt stiff, then things loosened up a bit. By the time we reached the front gates, my legs were heavy as lead again. My Sweetie asked if I wanted to rest and my brain was so foggy that I couldn't find an answer. Instead I said that I just wanted to concentrate on my walking to the metro station. We made it there with many of the other fans who were attempting to avoid the rush. Well, we were part of that rush and the subway cars were packed to standing room only. Sweetie became my stabilizer when the metro stopped or changed directions so I avoided hitting the floor.

To make it back to where our car was parked, we chose to walk after arriving at L'Enfant. This added yet another 5-6 blocks to our footed travels. At one point I had slowed down to the speed of molasses and the Sweetie suggested that I wait while he went ahead to go get the car. Now all the ladies out there probably will say, "Ahhhh, that's a great guy." What do you think I replied? "But that would prevent me from being able to say that I made it all the way back to the car." So he suggested we pause for a moment. When I began to be able to feel part of my legs again, we continued.

Just a little bit of rest and I was good to go. Well....good enough anyways. Once in the car I said,"Yay me!! Yay you!! Yay us!!" I thanked him for being so patient with me and so supportive. We discussed a lady at the metro station who was in such a rush she jumped in line when the ticket machine was giving him some trouble. How rude. He also shared that he had to try hard to be patient. I asked when and he referred to our walk from the metro station to the car. He was in a hurry and I was slow. He said that he just needs to get used to it, that sometimes he has to slow down for me. I told him that I had no idea, that he wasn't sending out impatient vibes.

He is growing in our MS relationship for which I'm truly blessed. I thanked him for his support and understanding. His response? After taking my hand in the car, "Well, of course, my Sweetheart. I think you did a fine job today. Did you enjoy yourself?" Yes, I did.

I went to a ballgame in a brand new ballpark and walked at least a mile in short spurts without falling over. Last night my muscles, especially at the top of my hips, were sore from the exercise. This morning those same muscles are less sore and my spasticity was a little less. I need to exert myself much more often; it would be good for me. Only real downside to all of this physical activity yesterday? I've fallen asleep at least 5 times today while trying to write and type this post. I'll come back later to reread and fix any errors I've missed.

"One, two, three strikes you're out at the old ball game."