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OPINION COLUMN: Big Pharma, Special Interests Set Medication Legislation Adrift

OPINION COLUMN: Big Pharma, Special Interests Set Medication Legislation Adrift

Via: The Berkshire Eagle Columnists

By Brian Sullivan, Special to The Eagle

My politics are to the right. They are so far to the right that there are days I can’t believe I’m left-handed. But I don’t vote the party line, I don’t think that’s right, uh, correct. I’m not possessed of a great political mind, so at the end of the day I’m hoping that common sense prevails, and that the best interest of all involved is served.

That’s why the political tale that is Jackie Quetti’s both baffles and infuriates me. It’s why the state of politics leaves citizens bamboozled, when well-meaning politicos can’t take their individual good intentions and coalesce that energy into progressive and positive government. Quetti’s story is a good example of state politics adrift at sea.

Quetti, 21, will host her fifth Western Mass. Walk for Epilepsy on Sunday at Farnam’s Crossing on Route 8 in Cheshire. The combination fundraiser and awareness event (three-mile walk at 10 a.m., registration at 9) was sparked in large part in March 2009, when Quetti suffered a near-tragic grand mal  Tonic-Clonic seizure at home on an otherwise routine Saturday morning.

Having rallied against smaller or milder seizures since an early age, this “breakthrough seizure” dealt the 2010 Pittsfield High graduate and Elms College sophomore a new hand, one that would change her life dramatically. The events of that morning were caused in all probability by a switch in epilepsy medicine from brand name Lamictol to generic brand Lamotrogene.

The formulation of the new medication was different enough to bring on the more aggressive type of seizure. It was an episode that Quetti had never experienced before and one that shook the foundation of the entire family. The switch in medication, which arrived through the mail, was done without notifying either Quetti’s primary care physician or the neurologist in Boston who also treats her case.

We’re not talking about the common cold. Epilepsy is serious, and the medicines used to treat it, if changed even slightly, can have very negative impacts. In the reconfiguration of a new pill, a little bit more of this and a little bit less of that can be possibly fatal. That Saturday morning changed a young girl’s immediate and long range future. A chance to go away to college was delayed until this year, when the family finally felt comfortable enough to let her attend Elms in Chicopee.

Massachusetts State House

Massachusetts State House

A bill is currently floating in the Statehouse that, if/when passed, will change the level of communication and allow primary care doctors and the patient to be notified in advance of any formula changes in medicine.

Quetti has appeared and spoken on behalf of the bill three times — yes, three times — at the Statehouse and offered her story as a selling point. Quetti has also lobbied her case in Washington, D.C.

So, what’s the problem? The lengthy stall is due, in part, to the usual wariness of special interest groups such as the pharmaceutical, medical and insurance communities, who want to make sure all T’s are crossed and I’s dotted before signing off. Taking care of “us” first trumps what’s best for young people like Quetti. At least that’s how I read the road signs.

“I’m usually right on top of that sort of thing,” said Nancy Quetti, Jackie’s mother. “I noticed the change in the name of the medicine, but didn’t think too much about it. It turned out to be a scary thing. Jackie began taking the new medicine about two weeks before that seizure, and she’s told me since that during those two weeks she felt not quite herself.”

The bill is not about just about notification of changing brand name drugs to generic, Nancy Quetti added. “It’s about generics to other generics, too.”

Les Brody is the president of the National Epilepsy Foundation-New England. He has also testified at the Statehouse in favor of the bill. But Jackie, Brody said, has been to the well three times in Boston and remains the bill’s biggest advocate and its strongest voice.

“When the bill does pass, it will have been Jackie who was very instrumental,” said Brody, whose foundation focuses on the education, service and research of the malady. “This bill is designed to protect individuals from medicine switches being made at the pharmaceutical level. It’s a safety-first bill.”

That may be so, but the clock keeps ticking, and that leaves people such as Jackie Quetti at a higher risk. The bill is designed to narrow that risk.

“It should have been a slam dunk,” said Brody, who added that Jackie Quetti’s repeated story and frequent visits to the Boston political arena have left her and state representatives on a first-name basis.

Nancy Quetti said that local state representatives and senators have supported and worked toward passing the bill.

Jackie Quetti is one-third of the Quetti triplets. Diana, a theater enthusiast, had a lead role in a play this past spring during her junior year at North Carolina State. Rachel, a former Pittsfield High basketball standout, has had her share of pressure moments on the hardwood.

Jackie said she’d gladly switch testifying at the Statehouse for either one of those high-pressure moments.

“Yes, nerve-wracking,” she said about testifying before committees in Boston.

But the young woman has accepted fate and learned to embrace her role as an advocate, and it was Brody who said that as much as he knows about the subject, he hasn’t walked a mile in Jackie Quetti’s shoes.

“When she speaks people have to listen,” Brody said. Brody added that when he lobbies for the bill he does so by emphasizing the social costs that come with no action. He said people with epilepsy are unemployed at three times the national average, in part because of their being prone to seizures.

“Think about it,” Nancy Quetti said. “When Jackie had her breakout seizure it involved an ambulance call and subsequent medical attention. That costs money at different levels. This bill isn’t about slamming generics or being negative about the medical, insurance and legal communities. There are so many good people in those areas. It’s just about trying to do the right thing for people like Jackie.”

I think common sense can play a role here. Agree?

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  1. As another victom of GENERIC MEDICATION, I have taken brand meds for almost 40 years, but because of unemployment, I had to go on disability and I could not get any assistance on the original, with reasonal prices, forcing me on generic. These last years have been my worst, attempting new medis and brain surgery. I had a high fever at age 8, which tamaged part of the left side.of the brain, which was partially removed in the surgery. Unless they have to endure, they will never understand. My meds have almost killed me 3 times, because my body absorbed 100%, og meds they normally say we only absorb 30%. There has to be a better way than pils, what about nutrition.

  2. I did wonderful on Lamictal. Now I’m on the same generic version and get clinic tonic seizures more and more. That is a big thank you to the insurance company! Not my Doctor tho. Insurance companies seem to have more control over our medical treatment than Doctors and ourselves!

    • Profile photo of Carol Carmella

      You are right! The insurance companies have too much control over ALL of our Healthcare! That is why we are in the mess we are in!

  3. I understand

    • Profile photo of Carol Carmella

      Sometimes…and I do mean sometimes…, insurances will pay for Brand Name seizure meds if the DOCTOR tells the insurance company that it is Medically Nessesary! It sure can’t hurt to ask your doctor to do that for you!

  4. They changed my daughters Topamax to generic she started having siezures the very next day from the generic drug. They did this twice to her. Thank you for fighting for us on this issue.

  5. Why pay for brand name med that has helped for years when a single ambulance ride to the er costs 10x more then most brand names …..not counting the er trip itself or if a person winds up admitted after……often having to be transferred to a major hospital…..but hey what do patients patrents/family and their neurologists know?

  6. If our lives arent tracked, than this is one hellva coincidence- went for my meds today to find that the pharmacy was out and had to use a brand and volume of anti-seizure meds are backlogged. The pharmacist suggested another brand that – do to my liking or not[ and said that was all they have.The Wrong dosage, wrong chemical structure with the meds are useless if one is to seize. In calling around to see if that was in stock anywhere – none are around. The Doctors don’t make the meds and Im not even sure if they know the chemical composition given there are so many meds they deal with in a day. With epilepsy and seizure disorders the offset of a chemical chain of compounds in a given med can change alot in ones body.

  7. my meds for my epilepsy have changed sevoral times to im now on keppra and its had changed my eye sight its hard to see when im out in the day time son is to brigt for me and my boens r more sencitive


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