HIV/AIDS and Persons with Hemophilia (PWH)
Blood or blood products are the only means of treatment of Hemophilia. While today virtually safe blood products, such as factor concentrates, are available, 30 to 35 years ago infusion of whole blood, Fresh Frozen Plasma (FFP) or lyophilized cryoprecipitate were standard treatment for Hemophilia. HIV/ AIDS and hepatitis were unknown at that time the screening of blood for blood for blood borne infection was mostly non-existent. This was the time when maximum Hemophilia patients got exposed to HIV and Hepatitis viruses. In India, even today, the high cost of AHF deters most PWH from getting this treatment and they tend to depend on infusion of unsafe, wet blood products mentioned above. These necessarily expose them to blood borne infections such as HIV/ AIDS and Hepatitis. If a PWH contracts any of these infections in addition to his inherited disorder, then the resulting complications can be extremely damaging both physically, emotionally and financially.
There are no rules to living with HIV and PWH who have tested HIV positive say that living with HIV is not that much different than living with Hemophilia. Both are lifelong condition that require constant care and management and can cause new complications in day-to-day living. These could mean dealing with sexual partners, friends, neighbours, schools or employers and preparing oneself for eventualities such as sudden illnesses, unemployment, and emotional trauma and so on. The important thing is to regain control of life despite HIV and Hemophilia. PWH can make few simple changes in their life style in order to lead a healthier life.
They should avoid alcohol, cigarettes and non-prescribed drugs as these cause further interference in fighting infections. Instead they should eat a healthier diet that includes fresh fruits, vegetables, grains and properly cooked meat, chicken fish etc. that nourish the system. They should also follow regular sleeping habits.
Exercise should become a regular activity. Walking and swimming are especially helpful. These build up a strong muscle tone that also helps in controlling bleeding episodes in Hemophilia.
Following healthy hygienic habits such as regular bath, not sharing shaving blades, tooth brushes are particularly important in order to avoid opportunistic infections that can be transferred from others to them.
Too much stress can be harmful therefore relaxation techniques such as mediation are recommended to keep stress at bay. These can be in the form of group therapy or one may develop his personal relaxation agenda that can be practiced from home. This may include sitting quietly and relaxing muscles. Following tertiary hobbies such as painting or singing or playing indoor games such as chess, carom etc. also help in relaxing.
Although getting angry, depressed or denying what is happening to one’s body are natural responses to HIV and Hemophilia yet it is worth remembering that peaceful acceptance of the situation is also valid a response. Emotions can vary in intensity. Grief, tears and sorrow are all part of living with HIV. Psychologists however, see even these as positive healing emotions and recommend that while under pressure to live with illnesses one should not forget the love, happiness and humor that life bring.
HIV reproduces itself very quickly, making billions of new viruses every day. Because the virus often makes mistakes when copying itself, each new generation differs slightly to the one before. These tiny structural differences are called mutations
If mutations occur in the parts of HIV that are targeted by anti-HIV drugs, it can result in strains of HIV that are less sensitive to the drugs. The mutant HIV strains are called drug resistant.
Drug resistant HIV strains vary, some may be highly resistant to anti-HIV drugs while others may be less so. When an anti-HIV drug is started, HIV that is fully susceptible to that drug disappears rapidly, leaving behind drug resistant viruses. These viruses continue to reproduce themselves despite the drug’s presence. Resistance is an important reason for failure of anti-HIV treatment. Viral load, which should drop when a new drug combination is started, may rebound if a population of drug resistant HIV increases.
Take HIV Treatment as Prescribed
It’s very important to take anti-HIV drugs exactly as the doctor prescribes them. This means taking every dose on time, and following any guidance about the kind of foods that can or should be taken with the dose. Sticking to these instructions is called adherence.
Missing or delaying doses, or taking a dose without recommended foods, lowers the amount of drug which is active in the body. This reduces the drug combination’s attack on HIV. Viruses that have been suppressed begin to reproduce, increasing the risk of resistant viruses emerging.
Missing even a few doses a month may be enough to cause the treatment to fail, which is why it is important that one is well prepared to start a new combination, and continue to be supported while one takes it.
Choosing a combination that suits the way you live, developing a pill-taking routine, and finding ways to avoid missing doses are all important. Over a period of time other issues may hinder adherence. If there are any concerns, or if one feels that the treatment isn’t working then one should speak to someone knowledgeable. NEVER stop treatment abruptly without seeking advice first – for some combinations this can allow resistant HIV to emerge.
You will read more about help that is available later in this booklet.
Passing HIV HIV can be passed from one person to another only through exchange of certain body fluids such as blood, semen and vaginal fluids. The infected fluid has to get inside the body in order for it to infect the new host body. The infected person needs to change his personal habits, most particularly sexual behaviour in order to avoid infecting others. Blood to Blood Contact If the blood of the HIV infected person gets into the body of the person without HIV then the non-infected person can get HIV infection. This is primarily how Hemophilia patients who are treated only by blood or bloods products get HIV infection. As HIV can be passed through blood, there is always a possibility of the infection being passed on through PWH sharing contaminated equipment such as needles and syringes. Therefore it is important that HIV infected PWH should NEVER share equipment with anyone else. The equipment should always be used once and disposed off after it has been washed with soap and water. If one is forced to reuse needles and syringes then they should ensure that these are properly sterilizedbefore use. Razor blades and tooth brushes should not be shared either. People injecting drugs should not share needles with anyone. There is an unfounded fear that a person with HIV will pass on the infection by bleeding on to another person. This is unlikely, as HIV virus cannot pass through unbroken skin. The contaminated blood or blood product has to come into direct contact with blood in another person for it passes on the infection. However experts recommend that if an HIV infected PWH cuts or injures himself then he should be careful not let his blood come into contact with someone who has open wounds, cuts or sores. Sexual Intercourse HIV can be passed during sexual intercourse if blood, semen or vaginal fluids are absorbed through the membranes lining the vagina, penis, rectum and in some circumstances the mouth. The risk of HIV transmission is higher if there are cuts or abrasions in those membranes. To avoid passing HIV during sexual activity, individuals should practice safer sex that includes correct use of condoms, use of water-based lubricants (that prevent the condom from tearing) and use of spermicidal cream foam or jelly containing Nonoxynol 9. The spermicides are an extra precaution that prevents pregnancy in case of a condom accident. In addition to this Nonoxynol 9 is known to destroy HIV in laboratory conditions and therefore much recommended. Spermicides are not encouraged for anal intercourse as they can irritate anddamage the anus and rectum. One should not use condoms made of sheepskin as they tear quite easily. Latex condoms are considered to be the safest. One should ensure that condoms are not out of date. These should be stored away from sunlight. Condoms should never be re-used. These simple precautions studiously observed could help relieve the anxiety, related to passing HIV infection to others, which most HIV positive persons suffer.
Conception and HIV Discordant Couples
Highly Active AntiRetroviral Therapy or HAART has greatly improved the quality of life and life expectancy in HIV infected persons. This has also encouraged many HIV discordant couples (couples where only one partner is HIV positive) to start a family. This situation is specially relevant to HIV affected hemophilic men and their spouses. Unprotected sexual intercourse is the main way by which HIV can be transmitted in such couples; it is therefore imperative to find means that minimize the risk of infection to HIV negative women while they are trying to conceive a child.
Studies indicate that semen contains the male reproductive cell, the spermatozoa, and other cells suspended in seminal plasma; HIV is found to be present in the non-spermatozoa cells and also as free virus in the seminal fluid. HIV maybe present in spermatozoa as well but it is not clear if it remains alive in these cells and therefore contributes towards HIV transmission. Since spermatozoa constitute only 10% of the total volume of semen even if these cells contain active HIV they contribute significantly less when compared with total exposure signified by sexual transmission if HIV. A study conducted in Germany on a group of HIV positive hemophilic men, prior to the widespread safe sexual practice, reported a 10% incidence of HIV negative women contracting the virus. Two other studies in UK highlight a virtually low (even no) of transmission risk to HIV negative women through sexual contact if they practice safe sex and follow complete medical advice. In one study conducted over a 15 year period, 26 children were born to 18 discordant couples, practicing safe sex and following complete medical advise, with none of the partners contracted HIV. Another study reports birth of 19 children to 14 discordant couples where one woman got infected with HIV but none of the children were tested HIV positive.
HIV discordant couples that wish to have a child need to balance the chances of conception against the risk of HIV transmission to the mother and as possible subsequence to the child. Couples require detailed information and lots of counselling on methods of conception and associated risks of transmission. The basic principle is to minimize the risk of transmission while improving the chance of conception. The following methods of conception are available to HIV discordant couples:
Timed ovulatory intercourse
Unprotected sexual intercourse is restricted to the time of ovulation. The risk of HIV transmission in this method is same as in regular unprotected sexual intercourse. This method however seems to offer best chance of conception. The time of ovulation is confirmed by the finding of a normal level of the hormone progesterone mid-way of the menstrual cycle. Before attempting this method of conception, the fertility tests should be confirmed as normal and any genital infection in either partner has been appropriately treated. A semen HIV load should be checked regardless of whether or not the man is on HAART. If HIV is not detected in the seminal fluid or the viral load is low, one may not assume that the man is totally risk free, this state however makes timed ovulatory intercourse a very safe option. Artificial Insemination with washed sperm of the HIV positive partner
This method requires direct injection of the sperm into the uterus after the sperm has been “washed” to remove seminal plasma and non-spermatozoa cells through centrifugation. The “washed” sperm is re-suspended in sterile fluid and screened for presence of HIV. If the test is negative then the sperm is inseminated into the uterus using a soft catheter. In Vitro Fertilization is one of the methods of conception that is also recommended for HIV discordant couples. This involves removal of sperm from seminal plasma and collection of the ova or egg from the uterus by surgical procedure such as laparoscopy. The egg is then fertilized with “washed” sperm in a test tube in the laboratory. The fertilized egg is implanted in the uterus for further development of the foetus. Though this procedure is routinely offered to couples having fertility problems, in HIV discordant couples it is suggested only for the purpose of minimizing the risk of HIV transmission.
All the procedures discussed here require careful fertility assessment infection screening of both partners and general pregnancy preparation. It may be worthwhile to note that artificial insemination with “washed” sperms is a prohibitively expensive procedure. The conception rate of each attempt is about 10%. Records available with us do not indicate that it has been performed in India. The purpose of including it in this booklet is to educate the reader on what is medically possible. The couples are advised to weigh the risk of HIV transmission not only to the partner but also possibly to the child before agreeing to bring the child into the world because the emotional, economic and physical burden of supporting an HIV infected adult or child are extremely high.
Where to go for help?
HFI Special Needs Cell was established in order to provide support to PWH who are infected with blood borne diseases or infections like HIV & HCV. This cell is being looked after by Mr. Rashid Lilani. The cell has set the guidelines, in consultation with HFI Medical Advisory Board (MAB), for support to PWH who are infected with HIV. The advice of the MAB is especially significant to those infected by HCV and for those who develop inhibitors.
The following support is available to PWH who have tested HIV positive
Free AHF whenever it is available.
Reimbursement of medical bills for drugs to treat and prevent opportunistic infections. Reimbursement of up to 50% cost of Anti-Retroviral Therapy (ART) drugs depending on the economic condition of the family. This support is available to patients whose CD4 cell count is near or below 200.