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Heroin 'epidemic' is getting funding but epilepsy research isn't

To The Daily Sun,

I have written this letter to let people know that November was Epilepsy Awareness Month. I am hoping to draw attention to this debilitating illness and raise awareness.

Throughout history there has not been enough serious research toward epilepsy, and without research there can be no breakthroughs, not to mention a cure. Just because you can't see epilepsy it exists, lurking invisibly, causing irrefutable damage. Today, the stigma for people with epilepsy is that you are strange, dangerous, weird, and someone to avoid. Here are a few facts:

— Epilepsy is the fourth most common neurological disorder in the U.S., after migraine, stroke, and Alzheimer's disease. Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson's disease combined. More people die from epilepsy than from breast cancer. There are 200,000 new cases each year. Up to 50,000 Americans die each year from seizures and related causes, including drowning and other accidents of epilepsy each year, and a total of more than 3 million Americans are affected by it. By some estimates, the mortality rate for people with epilepsy is two to three times higher — and the risk of sudden death is 24 times greater — than that of the general population.

— The vast majority of cases are children, most of them experiencing their first symptoms before the age of 18. However, between 1 and 3 percent of the population will develop some form of epilepsy before age 75. There is also a rise expected in the incidence of epilepsy among the veterans of the wars in Afghanistan and Iraq who have sustained traumatic head injuries.

I happen to be in the 1 to 3 percent category. My adult onset epilepsy became quite evident just after I turned 47 years old. It is thought now that it was coming on for a couple of years, but manifested when I had several grand mal seizures in February 2014. I have been living with the disease since, about a year and a half now. It is one of the greatest challenges, if not the toughest, I have had to face in my life.

Epilepsy is not a choice — it is a serious illness/disease. That is why I am offended by some people who are unable to make good choices and given generous resources at the taxpayers' expense. The "Heroin Epidemic" is getting headlines and even one of our state senators is asking for $600 million to fight the "disease" as its being labeled. Yet, public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis).

In total, and per patient, epilepsy research is significantly underfunded from three major sources: pharmaceutical companies, the government, and private foundations.

Pharmaceutical investment in epilepsy is less than in Alzheimer's and Parkinson's, and it's expected to decline further over the next several years. The government invests $140 million-160 million in epilepsy research, but per patient contributes less to epilepsy than it does to other major neurological disorders. Finally, at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson's, by contrast, receives $40-$50 per patient from nonprofits. Yet per researcher, funding for epilepsy lags average funding for all diseases by nearly 50 percent. All these statistics were provided by the National Epilepsy Foundation.

In conclusion, I must admit, I am disappointed by the lack of public announcements to promote awareness and understanding of epilepsy last month. I hope someday I can get to a point where my condition is more stable so I can become more involved in raising awareness and helping fight the illness. I have also sent this letter to our state senators and have published it here for all state legislators to read as well. Hopefully, this will start a well needed conversation.

Scott Kipreotis

Laconia

 

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State Sen. Jeanie Forrester - Opioid Task Force meeting every week this month

Last month, the governor called the Legislature back for a Special Session to address the heroin and opioid crisis in New Hampshire. I applaud her for realizing the significance of this issue and look forward to working with her to implement a thoughtful, long-term plan. This plan should work to eliminate the drug supply into New Hampshire; implement aggressive prevention programs so that our young people never enter into destructive behaviors; and increase treatment and recovery services to help those who have been caught in the cycle of addiction.

Fortunately there is a plan that's been in place since 2013 that addresses these objectives.

As a member of the Governor's Commission on Alcohol and Drug Abuse, Prevention, Treatment, and Recovery for the past three years, I was pleased to endorse Collective Action - Collective Impact, New Hampshire's Strategy for Reducing the Misuse of Alcohol and Other Drugs and Promoting Recovery 2013-2017.

In 2014, the Governor also received the Commission's Annual Report, which included a special section of recommendations and strategies tied to addressing the emergent heroin crisis.

As a commission, we have worked hard to bring awareness of this problem to the attention of legislators and the public.

As a member of the Senate Finance Committee, I can tell you that our committee has advocated for additional funding since the 2013/2014 budget cycle. In this past budget cycle, our committee fought hard for a 75 percent increase in funds for drug and alcohol programs. Across state government, we will be spending nearly $70 million on this issue.
Additionally in this budget, we were successful in getting funding for a program that helps women transitioning from incarceration with an integrated treatment program that addresses substance abuse and trauma conditions. With this program, these women will be better prepared for success once they leave transitional housing.
In the Legislature, we have been making progress, whether through additional funding for prevention and recovery programs, or legislation such as the Good Samaritan Law or making Narcan more available.
In October, multiple pieces of legislation were filed to address the drug crisis in New Hampshire. I have filed several pieces myself, including one that looks to stop the supply side of drugs coming into our state. This bill calls for the creation of a grant program that allows communities to follow the successful partnership model that the City of Manchester has with the State Police.
This partnership model, "Granite Hammer," is based on predictive analytics which identify high crime days or time periods throughout each week. These high crime days are countered with a high intensity police presence comprised of state and local law enforcement working together.
In a short time, this program has produced great results, with a significant number of arrests and as a result, drug dealers being taken off our streets. This is exactly the type of bold action we need by law enforcement to let drug dealers know there are no open markets in New Hampshire. It sends a signal that we are serious about stopping drug trafficking.
We recognize that cities and towns across the state are dealing with similar drug-related crimes and we want to expand on the success that Manchester has had in producing impressive results and employ the same tactics throughout the state.
Through thoughtful legislation and increased funding, we have been working on this issue and we appreciated the governor's desire to respond to the crisis. However, we were concerned that reactive legislation that doesn't receive a transparent and public process could cause unintended consequences. We also want to assure that we've created an effective continuum of care. We need to do the job once and do it right.

So we were pleased that the governor agreed with the House and Senate to introduce a resolution that establishes a joint task force to assure input from experts and stakeholders.

The resolution passed with overwhelming majorities and the work begins with the convening of the task force. This legislative task force is comprised of 26 members, 12 senators, 14 house members (15 Republicans and 11 Democrats).

The goal of the task force is to hear from the experts, have an opportunity to review the commission's recommendations and move forward with legislation in an expedited process.

The task force will split into three divisions and meet each week in December and produce an interim report on December 21.
Recommendations will be made in early January and we will fast-track of bills to be on the governor's desk by the end of January.

(Meredith Republican Jeanie Forrester represents District 2 in the New Hampshire Senate.)

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