Why Have a Foundation for Herpes?

While scientific knowledge about genital herpes has progressed, public attitudes seem slower to evolve. The stigma surrounding what essentially is a very common skin condition persists. This means some people initially diagnosed with herpes may experience shock, anger and distress. Once a person has been educated about the virus and has lived with the infection for some time they are likely to have a different emotional outlook.

We aim to dispel the myths, ignorance and stigma which society, both lay and professional, perpetuates. 

In New Zealand, 26.8% of women and 17.3% of men, by age 38, have genital herpes in NZ (Dunedin Multidisciplinary Health and Development cohort study). Eighty percent of these people do not know they have the virus as they have no symptoms or such mild symptoms they are never recognised or diagnosed. However, with or without symptoms people who are infected can shed the virus from time to time and potentially infect a partner.

In 1994 The Auckland Herpes Support Group with the help of health and medical professionals established the Foundation in response to the need to provide accurate up to date information, support, and understanding to people diagnosed with genital herpes.

We are funded by New Zealand District Health Boards and supported by an endowment left to the New Zealand Herpes Foundation in 2006. The Foundation sits under the umbrella of the Sexually Transmitted Infections Education Foundation (STIEF) which provides governance and project management support.

Objectives of the New Zealand Herpes Foundation:

• To provide up-to-date information and non-judgmental support to people with genital herpes.
• To provide health and medical professionals with user-friendly educational material that will assist with the diagnosis, treatment and management of genital herpes.
• To educate the public about the prevalence, transmission and management of genital herpes, thereby reducing the stigma and fear associated with this common infection. 

Now, and in the Future, the NZ Herpes Foundation Will Make a Positive Difference by:

• Operating a national tollfree number that offers easy access to information and support. 
• Working alongside doctors and other health professionals to encourage the best possible care for people with herpes.
• Providing accurate information that makes it easier for people with herpes to talk about their condition with partners and friends.
• Providing ongoing consensus guidelines for the medical management of genital herpes, including a resource package for health professionals to give to their patients.
• Conducting public education campaigns to increase general awareness about herpes, to reduce stigma and provide information on management.
• Developing and maintaining a website that hosts information for our target audiences - medical professionals, people with herpes and the general public.

Herpes Support Groups

Many people have found being able to meet others in the same situation and to share experiences is both supportive and normalising. Support group meetings, in conjunction with health professionals, also provide ongoing education. 

The Foundation can put you in touch with your local support group.

Structure of the Herpes Foundation

NZHF Trustees

The Foundation is comprised of the following Trustees:

• A person living with herpes
• A health professional
• A medical representative

STIEF Board of Directors

The STIEF Board of Directors is comprised of seven people representing those with herpes and health (and other) professionals who support them.

STIEF Professional Advisory Group

A Professional Advisory Group (PAG) has been appointed to support the NZHF Trustees and the STIEF Board of Directors by way of providing independent advice, review and update of the clinical guidelines on the medical management of herpes.

Professional Advisory Group Members

References:

1. Cunningham AL et al, Herpes Simplex Virus Type 2 Antibody in Patients Attending Antenatal or STD Clinic, Med J Aust 1993:158; 525-528
2. Corey L, MD, The Current Trend in Genital Herpes, Sexually Transmitted Disease March/April; 1994 21:38-44
3. Dickson N, Righarts A, et al. HSV-2 incidence by sex over four age periods to age 38 in a birth cohort. Sexually Transm Infect, 2014;90:243-5