Perception Vs. Reality
Chickenpox is not simply a mild childhood illness, but a
potentially serious infection whose complications result in an estimated
2,000 hospitalizations and 25 deaths in the United Kingdom each
Shingles is not simply an annoying rash experienced by a small
number of elderly persons, but is often a painful rash afflicting
nearly 200,000 individuals annually in the United Kingdom, with
such potential complications as post-herpetic neuralgia, long-lasting
damage to the eye and stroke.
Post-herpetic neuralgia, or PHN, is not simply a short-lived,
painful sensation, but, rather, damage to the nervous system
that may cause severe pain lasting for months or even years after
the shingles rash has healed.
The majority of people living in the UK will be affected at some
time in their lives by one or more of the diseases that are caused
by the varicella-zoster virus (VZV). However, public and health professional
concern in the UK over VZV infections is often limited while the incidence
of cases may be increasing.
The Virus That Strikes Twice
The varicella-zoster virus (VZV) first strikes as chickenpox
or varicella. The most common chickenpox-related complications
are bacterial skin infections. However, other complications include
inflammation of the brain (encephalitis) or pneumonia, although these
are rare in otherwise healthy people, particularly children. Chickenpox
is now preventable through vaccination. However, while childhood vaccination
against chickenpox is standard in the United States, it is not accepted
practice in the United Kingdom. (Further evaluation is required to
assist decision making regarding any change of policy in the UK.)
Following an episode of chickenpox, the varicella-zoster virus lies
dormant, or asleep, in nerve tissues. However, the virus can reactivate,
striking a second time as shingles or herpes zoster,
an often-painful rash or blisters commonly occurring in a band on
one side of the body, or clustered on one side of the face. While
current estimates place the annual incidence of shingles in the United
Kingdom at 200,000, its incidence is expected to increase due to the
growing number of men and women in the two most susceptible population
groups: individuals aged 50 and older, and those who have conditions,
or are undergoing medical treatments, that weaken their immune systems.
These include: HIV infection; chemotherapy or radiation therapy; corticosteroids
and transplant operations.
It is estimated that 10 to 20 percent of the British populationand
50 percent or more of individuals aged 85 and olderwill experience
shingles over their lifetime.
As the incidence of shingles is rising, treatment of shingles cases
may be sub-optimal. Risk factors for development of post-herpetic
neuralgia (PHN), a complication of shingles, are now well understood
and existing guidelines advise the use of antiviral drugs within 72
hours of rash appearance to reduce duration of PHN for patients at
high risk. Cost pressures dictate rational prescription of these drugs.
However, the cost of PHN is significant both in terms of personal
suffering and health economy.
In otherwise healthy individuals, shingles may disappear without major
consequence in two to four weeks. But the risk of shingles-related
complications increases with age, weakened immunity and lack of appropriate
treatment. Chief among these complications is post-herpetic neuralgia,
or PHN, the name given to the pain that lingers for months
or even years after the shingles rash has healed. The pain of PHN
may be sharp, burning, throbbing or stabbing. The skin may be exquisitely
sensitive to normally painless stimuli, such as the lightest touch
(as from clothing or bed sheets), to the smallest breeze, to changes
in temperature (either hot or cold). Pain caused by PHN can interfere
with a patients daily routines and quality of life, resulting
in depression. PHN is remarkably resistant to treatment and may persist
for months or years even for life.
Other shingles complications include damage to the eye, if shingles
affects the nerves to the eye, which can result in impaired vision,
or temporary or permanent blindness. In shingles patients with severely
weakened immunity, infections affecting the lungs, central nervous
system and brain are possible.
The British Dilemma
In England and Wales, VZV infectionschickenpox, shingles and
PHNare not notifiable diseases. Therefore, no case reporting
is undertaken by the Communicable Disease Surveillance Centre in London
(as is the situation for many other diseases in the United Kingdom).
This serious limitation on data collection means that the impact on
health by the varicella-zoster virus is not well understood by the
government, health professionals and the public in general. Perceptions
that chickenpox is benign and that shingles is a rare disease of the
old ignore the impact of both conditions on patients' health and quality
of life. In addition, such perceptions fail to recognise the extent
to which health service resources are currently employed in the management
of these conditions, especially in vulnerable patients
Data on VZV is provided in Scotland via the Centre for Infection and
Environmental Health, which has a national reporting system that includes
VZV. However, since this is passive and not active surveillance, the
data is inconclusive. In the United Kingdom, sentinel general practitioners,
via the Royal College of General Practitioners, provide numbers of
cases from GPs, but do not produce hospitalization or complication
rates. This "soft" data is regarded as merely an indicator
for epidemic proportions rather than for data analysis.
Currently, there is no organization dedicated to raising awareness
and fostering research of VZV infections in the UK. That task has
fallen to the worlds only non-profit entity combating VZVthe
VZV Research Foundation (VZVRF).
Meeting The Challenge: The U.S. Origins of VZVRF
In September 1989, Gladys T. Perkin began experiencing severe headaches
following cataract surgery. She and her son, Richard T. Perkin, dismissed
them as simply post-operative discomfort. However, the headaches became
unbearable and she began complaining of unrelenting pain. A second
visit to the doctor, and the appearance of the telltale blisters,
resulted in a diagnosis of ophthalmic shingles. The rash disappeared,
but the pain reoccurred, only this time it was much more intense.
The shingles had progressed to PHN.
Mrs. Perkin pleaded with her son to find a way to relieve her suffering,
but, not being a doctor and lacking a firm understanding of VZV infections,
he was, in essence, a powerless witness to her pain. This was about
In 1990, his mothers condition worsened and, in desperation,
Mr. Perkin began a full-time search for any and all information on
shingles and PHN. It was a challenging search, since VZV infections
are multidisciplinary. Shingles origins lie in chickenpox, which
is pediatric. Shingles manifests itself on the skin, so it is dermatologic.
It involves the nervous system, so it is neurological. It afflicts
primarily older individuals, so it is geriatric. It can affect the
eye, so it is ophthalmic. It is an infectious disease, so it has public
health implications. The pain of acute shingles and PHN can be unrelenting,
so it involves the fields of pain medicine and management, and anaesthesia.
And even psychology and psychiatry become relevant when one considers
the mental and emotional anguish VZV disease often inflicts.
Mr. Perkins search for knowledge did not yield what he had hoped
would be the means to end his mothers suffering, but, rather,
the means to begin an organized effort to focus worldwide attentionand,
hopefully, sufficient resourceson VZV.
Organization and focus was precisely what was needed in this field.
In fact, Mr. Perkin was astonished to learn that, despite significant
strides made by scientists worldwide, they were not unified in their
efforts. Moreover, there was relatively little research being conducted,
largely due to a lack of funding. And shingles and PHN were not top-of-mind
among health professionals, government officials and the public, with
little awareness of their widespread incidence and potential severity.
Motivated by these troubling realities, and the fact that there was
no single organization dedicated to VZV infectionsa necessity
if research and education on the virus was going to proliferateMr.
Perkin set about trying to remedy this. With the encouragement and
counsel of leading scientific and philanthropic mindschief among
them, Anne A. Gershon, M.D., professor of Pediatrics at Columbia University
College of Physicians and SurgeonsMr. Perkin established the
VZV Research Foundation in the spring of 1991. The Foundations
key objectives remain constant: to foster scientific research and
to educate the public and healthcare professionals about VZV infections.
A Decade of Leadership in the Fight Against VZV
2001 marked the tenth anniversary of the VZV Research Foundation, which
is guided by a Board of Directors and has a Scientific Advisory Board
and International Committee comprised of more than 50 of the worlds
leading experts on VZVincluding 14 British scientists. The Foundation
is a tax-exempt, nonprofit organization under section 501(c)(3) of the
U.S. Internal Revenue Code, identification number 13-3601316. The Foundation
must rely on the financial support of individuals, private philanthropies
and corporations to fulfill its research and education objectives. In
the U.S., gifts to the Foundation are tax deductible to the full extent
permitted by law.
Since its inception, the VZV Research Foundation has served as an
information resource for thousands of VZV sufferers and their families,
and to scientific and medical professionals who study or treat the
virus. Its primary activities to date include:
- Sponsorship of international scientific conferences, in addition
to scientific symposia, workshops and roundtables at scientific
meetings around the world.
- Provision of twelve, two-year research fellowships totaling more
than $1.25 million to: investigate the reasons for the virus
reemergence; develop new vaccines to prevent chickenpox and shingles
in the immunocompromised; and seek new treatments for PHN.
- Establishment of the VZVRF Ganglia Bank at Columbia University
College of Physicians and Surgeons, which will provide scientists
with human tissue samples for their VZV studies.
- Organization of a scientific working group (EuroVar), comprised
of European and American scientists, to study the desirability and
feasibility of universal vaccination against chickenpox throughout
- Development of educational materials for scientists and physicians,
including continuing medical education (CME) courses and publication
of the proceedings of its scientific conferences.
- Creation of educational materials and programs for the general
public, including: informational booklets; a website (www.vzvfoundation.org);
a toll-free, VZV Information Line; a television and radio public
service campaign; and public health forums attended by hundreds
of shingles and PHN sufferers.
- Establishment of the VZVRF Scientific Achievement Award honoring
scientists who have made important contributions to VZV research.
Expanding The Fight To The UK
One of the five recipients of the VZVRF Scientific Achievement Award
is R. Edgar Hope-Simpson, OBE, FRCGP, a retired, general practitioner
in Cirencester with no formal training in research or epidemiology.
Yet, he refined the theory that shingles is caused by a reactivation
of the chickenpox virus. Furthermore, he hypothesized that the increased
incidence and severity of shingles in older people was the result
of declining VZV immunity.
On February 12, 1999, 40 eminent scientists and physicians from throughout
the United Kingdom gathered in Cheltenham to pay tribute to Dr. Hope-Simpson.
At that event, several British participants expressed the need for
a focused effort to foster VZV research and education in the United
Kingdom. Their reasons were many and varied, but they mirrored the
factors that led to the Foundations formation in the US a decade
ago, specifically: the lack of formal organization, unity and focus
among scientists in VZV-related fields; the need for greater VZV research,
limited by a lack of funding; and little understanding of the widespread
incidence and seriousness of VZV disease among the public health and
scientific ministries of government, the medical community and the
public. Finally, as had been the case in the US, they noted that,
in Britain, there was no single organization championing the cause
of VZV research and education. Yet, now more than ever, one was needed.
In response to the UK scientific communitys requests, in 2000,
the Foundation asked a leading British researcher on PHN to spearhead
its efforts to establish a formal presence for VZVRF in the UK. Robert
W. Johnson, MB, BS, FRCA, a consultant anaesthetist at United Bristol
Hospitals and senior lecturer in the University of Bristol agreed
and, in turn, established an Executive Committee to help organize
a UK Scientific Advisory Board. Members of this "core group"
include: Barbara Bannister, MSc, FRCP, of Coppetts Wood Hospital,
London; Judith Breuer, MD, FRCPath, of St. Barts and Royal London
Hospitals; Nigel Higson, MA, BM, BCh, of Goodwood Court Surgery, Hove,
East Sussex; Peter Kennedy, MD, PhD, DSc, of Southern General Hospital,
Glasgow; Mike McKendrick, MB, BS, FRCP, of Royal Hallamshire Hospital,
Sheffield; and Martin J. Wood, MA, FRCP, of Birmingham Heartlands
The UK Executive Committee met in London on June 21, 2000 to discuss
the establishment of the Foundation in England. It was agreed that
the very first task would be to establish a multidisciplinary Scientific
Advisory Board. To that end, it was proposed that an organizational
meeting be held in late 2001. Other, potential initiatives discussed
at that meeting included:
- Adaptation of the Foundations patient and physician booklets
for the UK.
- Launch of a public service and media relations campaign to generate
- Development and execution of a major epidemiological study of
shingles involving a significant percentage of the British population.
- Facilitation of United Kingdom-based research and establishment
of a clinical and research data standard with the participation
of the international scientific community.
- Creation of an internet-based digest that would survey a wide
array of specialist journals for relevant articles and facilitate
their summary and review.
- Involvement of VZVRF in the updating of existing shingles management
Mr. Perkin also discussed the need to explore the registration of
VZVRF as a charitable organization in the UK, including the creation
of a domestic Board of Directors.
The Way Forward
Following a thorough review of the aforementioned, potential initiatives
for the UK, Dr. Johnson and his colleagues identified two, crucial
initiatives for implementation in the short-termthe first, organizational,
the second, research-drivenboth of which require funding.
I. Formation of a Scientific Advisory Board
VZVRF convened an organizational meeting in London on April 17, 2002.
Topics discussed included a pilot study on the epidemiology and burden
of shingles and post-herpetic neuralgia, funding for which has been
generously provided by Pfizer Inc.
II. Epidemiological Study of Chickenpox and Shingles
VZVRF is proposing a bold initiative that would mark the beginning
of formalized tracking of VZV in the UK. Specifically, the Foundation
proposes the design and execution of a major study of chickenpox and
shingles in parallel over 18 months on a population of approximately
1,000,000. The study would track the burden of diseases in the UK
so that there may be appropriate planning for the future healthcare
and interventions necessary to reduce the impact of VZV. The UK is
ideally suited to such research since chickenpox vaccination has not
yet been introduced.
The study would be conducted through a network of primary care practices.
Its design would be such that it could be repeated at intervals of,
for example, ten years, to detect changes in chickenpox and shingles
following population changes with regard to age and disease and the
introduction of chickenpox vaccination.
VZVRF believes the data collected would be relevant and innovative,
since it would enable scientists to finally determine the true incidence,
and health and economic costs, of VZV infections in the UK. This study
would also serve as an impetus and model for similar studies throughout
Europe, and its results would significantly relate to the Foundations
aforementioned, EuroVar working group, which is exploring the desirability
and feasibility of universal chickenpox vaccination throughout Europe.
Funding for a pilot study has been generously provided by Pfizer
Joining The Fight Against VZV in the UK
As referenced earlier, in the UK and throughout the world, the major
impediment to the fight against VZV is a lack of sufficient funding.
VZV researchers continue to find it difficult to compete for grants
with "headliner" diseases such as AIDS, heart disease and
cancer. These and other diseases merit as much research money as is
available, but so, too, do VZV infections.
VZVRF believes that, with a higher level of funding and a focused,
interdisciplinary research effort in the UK and worldwide, scientists
may finally unravel the reasons for the virus reemergence and
develop more effective therapeutic and preventive measures for VZV
infections and their complications.
To that end, the VZV Research Foundation has taken the first step
in establishing a formal presence in the United Kingdom. This paper
represents a second step, since it serves as a formal request for
support from you, as a leader in the UK philanthropic and/or corporate
sectors. By providing financial support for the Foundations
UK Scientific Advisory Board meeting, and for VZV research and education
in the UK, you and your organization will be helping to pioneer an
effort aimed at sparing future generations of the pain and suffering
currently experienced by hundreds of thousands of individuals in the
UK, and millions more worldwide.
For a formal, request-for-funding proposal, or for further information
about VZV infections and the work of the Foundation, please contact:
VZV Research Foundation
590 Madison Avenue
New York NY 10022
Thank you for your consideration.
The VZV Research Foundation does not practice medicine and no information
in this document should be considered medical advice.