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Cure Coming Soon

Help me with a letter that I'm sending to PCAST

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Cure Coming Soon

Well I received an email from Dr. Debbie Stein at PCAST. I would like to send her some great information. It needs to be short as I'm going to request she reviews my email with other PCAST members and President Obama on Oct. 22-23. Dr. Cullen's grant request was not approved so I'm hoping we can get the attention of PCAST regarding his research along with Harvard and UofF.

I'd prefer to send the email by late Sunday night or early Monday the 19th. Give me some HSV facts that might interest PCAST to become interested in vaccine and cure research. I've attached her email below. I will not be attending in person. The last time I spoke with Dr. Stein she stated she'd review information I sent her about HSV with PCAST. I'd like to provide her with a shorter email but with a wealth of information about HSV and those conducting research, etc.

Greetings,

Thank you for signing up for the public comment portion of PCAST’s meeting. At this point, the number of individuals who have signed up for participation exceeds the time we have available. Therefore, I am asking each of you to:

(1) Confirm your participation by responding to this email;

(2) Consider not participating if you have spoken at a previous PCAST meeting on the same topic so that others have an opportunity to provide their thoughts to PCAST about their ideas.

If you do decide to speak at the PCAST meeting, your time limit will be two minutes. This time will be strictly followed. As indicated in the Federal Register notice for this meeting, the public comment period is designed for substantive commentary on PCAST’s work topics and not for marketing purposes. Note that PCAST does not provide travel costs for your participation in the public comment session.

Thank you again for your interest in communicating your ideas to PCAST. Please feel free to contact me with any additional comments or questions.

Deborah D. Stine, PhD

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Cure Coming Soon

Here's the final letter

Dr. Deborah Stine,

I am not able to participate in person. I do however respectfully request that you speak with those in attendance at the next PCAST meeting on Oct. 22-23, 2009. As stated in my previous email, I would like to inform President Obama and all those of PCAST about the current Herpes Simplex Virus research, HSV-1 (Cold Sores & Genital HSV-1) & HSV-2 (Genital Herpes which can become oral herpes).

According to a study conducted by The American Social Health Association and the Kaiser Family Foundation, there will be more than 15 million new cases of sexually transmitted disease every year. That boils down to 41,095 newly infected every single day. One of the most common sexually transmitted disease is herpes simplex virus (HSV) the cause of cold sores and genital herpes. 75% of the U.S. Population has HSV-1 while HSV-2 is affecting approximately 45 million Americans. It is estimated that 1 in 4 adults over the age of 12 have HSV-2. They're currently no cures or vaccines for HSV-1 and HSV-2.

This virus is sometimes a deadly virus to babies and I believe more funding is necessary to protect our youth, cure those infected and protect future generations. Researcher Dr. David M. Knipe at Harvard University is researching a HSV vaccine. Researcher Dr. Bryan R. Cullen at Duke University is researching a HSV cure. Researcher Dr. David C. Bloom at University of Florida is researching a way to inhibit HSV which would prevent recurrence.

Facts about HSV:

  • HSV-1 (Cold Sores & Genital HSV-1): Herpes labialis is an infection caused by the herpes simplex virus 1. It leads to the development of small and usually painful blisters on the skin of the lips, mouth, gums, or lip area.
  • Most people in the United States are infected with the type 1 virus by the age of 20. 75% of the U.S. population has HSV-1.
  • The virus remains in the nerve tissue of the face.
  • The virus can be transmitted through fluids from the mouth (asymptomatic viral shedding) even when the carrier is not having an outbreak. This is the #1 cause of HSV transmission.
  • The virus can infect the genital area causing genital hsv-1 through oral sex.
  • Herpes infection of the eye is a leading cause of blindness in the United States, causing scarring of the cornea. An estimated 400,000 Americans have recurrent ocular herpes, with 50,000 new cases occurring each year.
  • HSV-2 (Genital Herpes & Oral Herpes): Genital herpes is a sexually transmitted viral infection affecting the skin of the genitals.
  • In America, one out of every four of the adolescent and adult population are infected with genital herpes.
  • It is possible for a person to carry the virus without knowing that they have it, since up to 90% of people who are infected with gential herpes show no signs of the infection.
  • Once a person is infected, the virus hides within nerve cells, making it difficult for the immune system to find and destroy it. Within the nerve cells, the virus can remain dormant for a long period of time, which is called "latency."

I hope with the information I've provided to PCAST, those affected by the HSV virus may be one step closer to having cure and vaccine research be funded. Besides the doctors I've listed, they're many other universities and private companies studying both cures and vaccines.

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smithconfused

Fact Highlights for letter

This information is from different sources: CDC and NIH. I think these items are what you should highlight or focus on.

1. http://cdc.gov/std/Herpes/STDFact-Herpes.htm:

Genital herpes can cause recurrent painful genital sores in many adults, and herpes infection can be severe in people with suppressed immune systems. Regardless of severity of symptoms, genital herpes frequently causes psychological distress in people who know they are infected.

In addition, genital HSV can lead to potentially fatal infections in babies. It is important that women avoid contracting herpes during pregnancy because a newly acquired infection during late pregnancy poses a greater risk of transmission to the baby. If a woman has active genital herpes at delivery, a cesarean delivery is usually performed. Fortunately, infection of a baby from a woman with herpes infection is rare.

Herpes may play a role in the spread of HIV, the virus that causes AIDS. Herpes can make people more susceptible to HIV infection, and it can make HIV-infected individuals more infectious.

2. http://www3.niaid.nih.gov/news/newsreleases/2009/herpesHIV.htm:

New research helps explain why infection with herpes simplex virus-2 (HSV-2), which causes genital herpes, increases the risk for HIV infection even after successful treatment heals the genital skin sores and breaks that often result from HSV-2.

3. http://health.nytimes.com/health/guides/disease/genital-herpes/complications.html:

Complications of herpes.

I know this may seem long but you can definitely make it concise. Mention the risk between genital herpes and HIV as discussed in the NIH study. That should definitely get their attention. Make note that herpes is not part of a routine STD screening. Although CDC says that there has been a decline in herpes infection, people are still getting infected each year because lack of education of the virus, misinformation, misdiagnosis by health care providers, etc. You can also discuss promising research for finding a cure by Dr. Cullen. Stress the importance of vaccination and preventative measures. Although, I don't know the exact cost of herpes on our health care system, I am pretty sure it affects it somehow.

Last but not least, the stigma attached to herpes. Yes, it is an STD, but we herpes does not discriminate! It does not matter what class, ethnicity, race, gender, education status....ANYONE CAN GET HERPES TYPE ONE OR TWO! Heck, if 1 out of 4 people has it, then a few people at that meeting have and don't even know it.

IF you need anything else, please let me know.

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HerpSgBoy

As mention above, do you know if there is any representative last year at PCAST for HSV? If there is i think the chances of getting funding and everything is really very very slim. And its very sad. =(

Hope we still can get it through PCAST.

First hope from Dr. Cullen is gone =( Really very depressed and sad now =(

Feeling hopeless.

But will help if there is any help needed. Really hope PCAST can help out. Our last hope.

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Cure Coming Soon
As mention above, do you know if there is any representative last year at PCAST for HSV? If there is i think the chances of getting funding and everything is really very very slim. And its very sad. =(

Hope we still can get it through PCAST.

First hope from Dr. Cullen is gone =( Really very depressed and sad now =(

Feeling hopeless.

But will help if there is any help needed. Really hope PCAST can help out. Our last hope.

I feel your pain. When I'm not feeling happy about this horrible virus, I'm sure 95% others on this forum are feeling the same way. I'm trying my hardest to have my letter read aloud at the next PCAST meeting.

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smithconfused

To Cure, i think your letter is good but I think you should include the research study done by NIH on the risk of GHSV and HIV. Just a suggestion. Many people do not think HSV is a life threatening so it seems to not be that serious or a big deal. It is a big deal for those of us suffering from it.

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Cure Coming Soon
To Cure, i think your letter is good but I think you should include the research study done by NIH on the risk of GHSV and HIV. Just a suggestion. Many people do not think HSV is a life threatening so it seems to not be that serious or a big deal. It is a big deal for those of us suffering from it.

Thanks for your input. I've already sent the letter and it's been received.

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HerpSgBoy

its 22nd of October now. Hope The PCAST works, lets pray hard guys.

Ohh ya cure, is anyone attending on our behalf?

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