Kernow Positive Support
STOP PRESS | charity details
help line | peer support | hardship fund | welfare rights advice | therapeutic services | newsletter | training
service user group | eddystone trust | positive action south west | torbay pride support | pash | drug projects
service user group | eddystone trust | positive action south west | torbay pride support | pash | drug projects
royal cornwall hospital - truro GUM clinic | derriford hospital - plymouth GUM clinic | health promotion service
haemophilia | hiv publications | hiv support | grant giving | respite & retreat | online support | hepC support
hiv - the facts | welfare rights assistance | hiv - travel insurance | sexual orientation issues | 24hr help
drop-in services | retreat centre
our help line | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link

 

 

 

hiv - the facts

How many HIV-positive people are living in Cornwall?

The actual figures are speculative, and it is very hard to determine how many people there are who are actually HIV-positive and living within the county, many people are unaware of their status and several of those who know their status have registered and access clinical and support services outside the county. However, the number of people who are registered HIV-positive with the Royal Cornwall Hospital Genito-urinary Medicine Department (GUM Clinic) in Truro and the Derriford Hospital clinic based in Plymouth are as follows:

Royal Cornwall Hospital - Over 180 individuals registered. - figures as of January 2014

Derriford Hospital (Plymouth) - 20 Individuals registered - figures as of 2012

Currently, over 99% of those officially registered as HIV-positive and living in Cornwall access the service provisions of Kernow Positive Support (KPS), including their family, partners and carers. HIV - the Facts Leaflet is available clicking here or on the button adjacent.

Futher information on our KPS Enabling Futures HIV Awareness training courses are available by clicking here or the button adjacent.

What is HIV and how does it affect the immune system?

Human Immunodeficiency Virus (HIV) is a virus that attacks cells in the immune system and produces defects in its function. These defects may not be apparent for several years but eventually lead to a severe suppression of the immune system's ability to resist harmful organisms. The virus can also reach certain brain cells causing physical damage to nerve cells although the chance of this can be reduced with some of the anti-viral drugs available. There are two main types of HIV - one is more prevalent in the USA and Western Europe (HIV-1), the other is more commonly seen in Africa and Asia (HIV-2). Also, another number of strains have been found which are less common.

Being HIV-positive does NOT mean the individual will die soon; many people live for several years before showing any signs of infection and there are apparently healthy people around who have been infected for more than ten years. The body's immune system is complex and consists of many cells which are mobilised when the body is perceived to be under attack from outside. This attack may come from bacteria, viruses or foreign bodies (for example a splinter). One type of these cells called T-cells (also known as CD4)  becomes infected with HIV and can no longer fight infections. As HIV progresses within a positive individual, more and more of these T-cells become infected with HIV and the weaker that individual's immune system becomes. A 'normal' healthy individual has between 500 and 1200 T-cells per millilitre of blood, although this figure can vary greatly due to other external factors such as illness, stress, fatigue and heavy exercise. Within everyone, there are certain viruses which are normally kept in check by a healthy immune system. However, with a weakened immune system, these  viruses are not kept in check and will 'break out' giving rise to various illnesses (shingles is a good example of a virus of this type). These illnesses are called 'Opportunistic Infections'. As an HIV-positive individual's immune system weakens, they can become more likely to suffer from opportunistic infections as well as being more open to a more serious AIDS defining condition.

Are there any symptoms I should look out for?

Symptoms are very difficult to assess, some people may develop flu like symptoms shortly after exposure, some may develop a skin rash or swollen lymph glands in the neck and/or under the arms. Many people have no defining symptoms at all. Naturally, many symptoms that occur could be any number of medical problems that everyone gets from time to time.

If you feel you may have been exposed to the virus and/or are worried about HIV you should seek advice from a health advisor at your local Genito-urinary medicine department (GUM) at either the Royal Cornwall Hospital or the Derriford Hospital. Indeed, you can contact and/or attend an appointment at any major hospital with a GUM clinic facility within the UK. The HIV test is a free and confidential service and results are normally available within 2 weeks.

Worrying about whether you have been at risk to HIV can be very stressful, and all sorts of fears may go through your head. These in turn can bring about a variety of symptoms that may worry you further - symptoms like the ones we have described above. In these circumstances KPS would always advise you to have an HIV test, which will assist you to move forward whatever the outcome.

How is HIV diagnosed?

Approximately three months after infection, the body starts to produce antibodies against HIV in an effort to protect itself. The test for HIV looks for these antibodies and if they are found, the individual is said to be HIV-positive. Because of this lapse between infection and antibodies being produced, it is possible for someone newly infected to still test HIV-negative immediately after infection. This initial three month period is called the 'Window Period'. It is therefore advised to take another test after three months to be sure the person is clear of HIV infection. It is not a test for AIDS; it is a test for HIV (Human Immunodeficiency Virus) which is now widely believed to be the cause of AIDS. The test is carried out on a small sample of blood taken from a vein in the arm. The results are normally obtained within two weeks and can be carried out at any GUM. (Genito-Urinary Medicine) clinic. Paying for the test to be done privately will mean results may be available within 24 hours. This arrangement can be made through the GUM. clinic.

How is HIV progression measured?

The progress of HIV is measured by counting the number of T-cells in a sample of blood. The lower this figure, the weaker the individual's immune system has become although factors such as stress and other illnesses can deplete it further. Because so many factors affect the T-cell count (also known as CD4 count), it is the general trend rather than absolute figures that should be looked at. A one-off low result in isolation should not cause too much worry; a count declining over several months shows the immune system suffering under attack from HIV. T-cell counts are usually done every three months and involve a nurse taking a small sample of blood on each occasion. It is usual for other blood samples to be taken at the same time to check such things as liver function to get an early warning should other problems start to occur within the body. Another test performed at the same time is called viral load. This counts the number of HIV particles within a blood sample, giving an indication as to how active the HIV is.

Because HIV is an unstable virus, it mutates and changes fairly rapidly. Eventually it comes up with a mutation that is resistant to the anti-viral drugs a individual is taking. The more active the HIV is, the higher the chance of a drug resistant strain is of occurring. It has been shown in drug trials that combination therapy (i.e. taking three, four or even more anti-viral drugs together) that viral load can be driven to very low levels in 70% of HIV-positive people. Most treatment centres offer viral load testing as it recognised as giving an indication of the effectiveness of medication and a warning that treatment may need to be considered or changed. If the treatment centre does not offer it, you may wish to move your treatment to another centre - you are perfectly entitled to change at any time if you are unhappy with the treatment you are getting. However, you should try to stay with the same treatment centre if possible for consistency.

How is HIV passed on?

HIV is passed on by the exchange of bodily fluids. While some bodily fluids contain larger amounts of HIV, others contain practically none. Blood, semen and vaginal fluid all contain large amounts of HIV. Saliva and tears and bodily waste contain very small amounts of HIV.

The main methods of transmission of HIV are:

SEXUAL

  • · unprotected penetrative intercourse.
  • · contact of semen, vaginal fluid, anal wall secretions.
  • · blood-to-blood contact with cuts or abrasions.
  • · contact of semen or vaginal fluid with mouth or throat infections  k or bleeding gums.
DRUGS
  • · sharing of needles
MOTHER TO BABY
  • · Higher risk from natural childbirth. (as opposed to caesarean)
  • · Breast feeding.
BLOOD PRODUCTS
  • · Contaminated blood or blood products.

As all blood and blood products are now routinely tested for HIV in this country, this method of infection should no longer occur. However, there are small risks due to the virus mutating and therefore current tests not being able to pick up the newer strains. Testing for HIV is not always available in certain countries overseas, especially in Third World countries.

The HIV virus is NOT passed on by ordinary day-to-day contact, shaking hands, kissing, sneezing, toilet seats, or by sharing a glass of water. The only precautions necessary in living with an HIV positive individual are common sense hygiene ones. If blood, vomit, faeces, etc. need cleaning up, wear rubber gloves and thoroughly clean the area with disinfectant.

Do not share toothbrushes. It is very difficult to contract the HIV virus except from the risk areas above. A 16-year-old boy, both of whose parents were HIV-positive and whose sister was also HIV-positive, lived a normal family life with them and is still HIV-negative.

What is the difference between HIV and AIDS?

An infected individual can live with HIV for several years without showing any signs of problems (this stage is commonly known as asymptomatic infection). As the immune system starts to deplete, opportunistic infections such as fungal rashes and minor chest infections may start to appear - this stage is called symptomatic HIV. Eventually, the immune system may degrade to the extent that a large number of opportunistic infections may start to appear. These may lead to further complications and eventually an AIDS defining condition. Once the first of these conditions is seen, the individual is said to have developed Acquired Immune Deficiency Syndrome (AIDS). An individual with AIDS can still live a healthy life with the right medication (for example, individuals with AIDS have run marathons).

Asymptomatic HIV

There are no clinical problems apart from the individual carrying the HIV virus. However, there may be a number of psychological problems in the coming-to-terms with becoming HIV positive. These may translate into depression, clinical depression or, in rare cases, manic depression.

Symptomatic HIV (opportunistic infections)

The clinical problems associated with opportunistic infections are skin rashes, minor fungal infections, herpes, minor chest problems, thrush in the mouth and genital areas and shingles. These varied infections are controllable, but in many cases are the first signs that the immune system is starting to fail.

Symptomatic HIV (AIDS defining conditions)

The clinical diagnosis of AIDS is very specific. For medical purposes there must be a presence of life-threatening infections or cancers together with the simultaneous suppression of the body's immune system. There must also be the absence of other known illnesses which could cause immune deficiency. AIDS is defined by a number of specific conditions.

What treatments are there for HIV/AIDS?

There is no cure for HIV. Vaccines are at an early stage of development and testing and are, at best, several years from being available . However, during the last few years, progress has been made in understanding how HIV attacks the immune system and replicates itself. This has allowed progress to be made in developing drugs to slow down its progress. Most of the drugs have long scientific names but more often are referred to by a set of initials - easier to remember and easier to say! Anti-viral drugs fall into three categories according to which part of the HIV replication cycle they attack. The first group to be developed were the reverse transcriptase inhibitors (also known as nucleoside analogues or NAs) - these include the drugs AZT, ddC, ddI, d4T, 3TC and abacavir. AZT/3TC is also available in a combined pill called Combivir.            

The second group to be developed were the protease inhibitors (PIs)- drugs such as; indinavir, ritonavir, saquinavir and nelfinavir. The third group to be developed were the non-nucleoside reverse transcriptase inhibitors (NNRTIs) - drugs in this class are efavirenz, nevirapine and delavirdine. Other drugs (in all three categories) are continually being made available, under development and/or testing, but all drugs must be shown to be safe and to have beneficial effects before being licensed for use. To make matters even more confusing, each country has different licensing criteria. The USA usually licenses drugs first with Europe following six to nine months later, although some drugs may be available on 'compassionate' grounds before being more generally available. Drug trials are also regularly conducted whereby unlicensed drugs make be taken in combination with other anti-virals to test their action against HIV.

Not all treatment centres take part drug trials, but some of them will take part in some trials, you can ask if your local G.U.M clinic undertakes trials, and where trials, you may be interested in are conducted. It has been shown that using a combination of anti-viral drugs has a greater and more prolonged effect at combating HIV than one drug alone - this is known as combination therapy. Obviously, three drugs cost more than one and some clinics and health authorities are balking at prescribing combination therapy citing cost grounds but this argument is being overcome. The usual regime is two reverse transcriptase inhibitors and either one protease inhibitor or one non-nucleoside reverse transcriptase inhibitor, but it is not yet clear as to when to start taking drugs. All anti-virals, even in combination, only slow down the progress of HIV although combination therapy has shown promising results in 70% of HIV-positive people. In order to maximise their benefits, it is important that anti-viral drugs are taken precisely as prescribed without altering or missing doses. Some drugs must be taken after food, others on an empty stomach so taking them can become a logistics nightmare. If the timing or remembering to take the anti-virals is a problem, clinics should be able to provide someone to provide advice. Also, there may be side effects from taking the anti-virals, either short term when starting to take the drugs, or long term after several months or even years. It is imperative that anti-viral tablets are taken at the correct dosages and times. If doses are missed, there may be insufficient levels of the drug in the bloodstream to suppress HIV and drug resistant strains of the virus may well develop, rendering the effectiveness of the drug useless. Many of the drugs in each class are cross-resistant - resistance to one of them may preclude any benefit from others in the same class.

Any person subsequently infected with HIV by someone taking anti-viral drugs may well also become resistant to these drugs if at some stage they need to take them. Other drugs, either medical or recreational, may interfere with the action of the anti-viral tablets. To avoid problems, clinics should be advised of any other drugs being taken. When the T-cell count of an HIV-positive individual drops to certain levels, they become liable to contract certain opportunistic infections. At this point, it is suggested they start taking medication to prevent these infections occurring - this is known as prophyllaxis. For example, when the T-cell count drops below 200, an illness called Pneumocystis corinii pneumonia (PCP) is virtually certain to occur. By taking the drug septrin or Dapsone, the likelihood of suffering from PCP is significantly reduced. A number of drugs are now available to control and maintain the progression of a large number of AIDS defining conditions that only a few years ago caused certain death very quickly (in many cases within six months). There is currently much ongoing research in the treatment of HIV disease, improvement in treatments and new drug availability. But HIV is still a very serious illness and, ultimately, fatal.

What can I do to help?

It is probable that the HIV-positive individual is as upset by his or her diagnosis as you are. They may have been recently diagnosed and are still coming to terms with the news. They may still be in shock. You may be the first individual they have told. However upset and confused you may be, remember you are not alone. Many of the volunteers and members in specific HIV/AIDS support groups have been through what you are going through right now. Don't be afraid to contact support groups for help, advice and comfort. No-one will judge you and all contact will be treated in strict confidence. Although you need support right now, so does the HIV-positive individual. He or she has shown a great trust in telling you - please don't betray that trust by pushing him or her away or being angry. You may already be experiencing fear and anger - these are normal reactions and you should not seek to suppress them. Seek support from one of the groups listed within our Website.

Talking out your feelings with someone is important for your well being. Taking your anger out on the HIV-positive individual will not help them and may well alienate you from them. This will only make things worse for all of you. Instead try to work with the HIV-positive individual, finding out about the illness, possible treatments, welfare benefits, etc. Support groups offer a wealth of information and expertise, so don't be afraid to ask for help. In an environment where ignorance and fear prevail, you will find the support groups like an oasis where people share the experiences of HIV/AIDS without risk or judgement in an atmosphere of trust and co-operation. Allow the person with HIV to tell you things in their own time. Allow the person with HIV to deal with the news of the diagnosis in their own time and in their own way. Be prepared for things to change both physically and psychologically over time. Find out about HIV and the related issues as this will give the other person confidence in you. Be honest with yourself and how you feel about HIV/AIDS. Contact a local support group or voluntary agency and find out how others in your situation are dealing and coping with HIV/AIDS.

How do I tell the rest of the family/friends/neighbours?

The simple answer is, you DO NOT tell them. It is up to the HIV-positive individual who he or she wishes to tell. He or she might not wish to tell anyone. Or everyone. But it has to be his or her decision, NOT yours. He or she may ask you to tell someone on their behalf, but you should not divulge their status without their agreement. Think how shocked you were when you were given the news. Now imagine the reaction of telling someone else. They may not be as understanding or as helpful or as unprejudiced as yourself. They may start a hate campaign against you and the HIV-positive individual. They may tell the rest of the neighbourhood or workplace or even the local media. You may be faced with hostility, fear, ignorance or even aggression. And the HIV positive individual will also feel he or she has totally lost control. HIV has already turned their life upside down - the more people who know their status, the more likely they are to have to face a hostile reaction for which they are probably unready and ill-prepared to face. If you must talk to someone, please use one of the HIV/AIDS support organisations or help lines within our Website.

These Support Groups will treat anything you say in the strictest confidence. Quite often, the person you speak to will either themselves be positive or have a family member or partner who is HIV-positive. They will totally understand the emotions and fears you are experiencing and will be able to help you talk them through. You will not be judged; you do not even have to give your name. They are there to help you should you need it. Control must stay with the HIV-positive individual. It is important for them to make their own decisions regarding their life, their treatment and who they tell. Where can I get help? Your local HIV/AIDS Voluntary Group details and Telephone numbers are available on this website or by contacting the National AIDS Helpline 0800 567123 (24hr helpline).

Within the Cornwall area Kernow Positive Support (KPS) will be able to support you through our help line on the choices available to you for support. Do not hesitate to contact us at KPS on (01208) 264866.

 


About Us | Terms of use | Contact Us | ©2004 Kernow Positive Support