NEW LIFE CONDITIONS AND NEEDS
Pregnancy
Many HIV-positive people have concerns about whether they will be able to plan a family. They worry that they could pass HIV to their partner through condomless sex or that the virus could be passed on to the child.
However, in most cases this concern is unfounded. Modern HIV treatment makes it possible to decrease the viral load to such an extent that the virus can no longer be transmitted to other people.1,2 This is why HIV-positive people who are taking HIV treatments successfully can have sex without a condom and thus conceive, carry and give birth to children naturally. Even a vaginal birth and breastfeeding the baby are usually not a problem, provided that adherence to HIV treatment is consistent and the number of viruses in the blood is kept below the detection limit. In any case, it is best to talk to your HIV specialist about the conditions under which a vaginal birth and breastfeeding are possible.
Medications during pregnancy
You might be thinking: aren't the medications used for HIV treatment harmful to the unborn child? Perhaps you are wondering whether the baby is absorbing the medication through breast milk when breastfeeding? There are actually certain HIV medications that should not be used during pregnancy and breastfeeding. However, there are also some that can be used.
It is therefore important to consult your doctor if you have a specific desire to have children. He or she can tell you whether your current HIV medications are still suitable for you if you become pregnant. If not, you can plan together how to adjust your treatment so that it does not interfere with your pregnancy or harm your unborn child. If you become pregnant unexpectedly, you need to act: in this case, talk to your doctor as soon as possible to make sure that your current HIV treatment is compatible with pregnancy.
What happens once the baby is born? If you are worried about passing the virus on to your child while changing nappies, cuddling, playing or doing anything else parents do with their children, you can relax. As shown in more detail in the section HIV transmission, in normal everyday situations, there is no risk of transmitting the virus to others, even to people you are as close to as your child.
If the mother's viral load is below the detection limit, breastfeeding is usually possible. Other prerequisites for safe breastfeeding include regular intake of HIV medication and willingness to regularly check the viral load of mother and child. It is recommended that the mother discusses the topic of breastfeeding with the HIV specialist early in the pregnancy and that the necessary requirements for safe breastfeeding are discussed together.
For HIV-positive mothers, it is also worth taking a closer look at the child's medical history booklet and the maternity pass. Often, the child's medical record still contains the note "HIV-positive mother" or the maternity record contains a note about the positive HIV status.
It is advisable to read these documents carefully. If you notice such a note on your own documents, you do not have to simply accept it but can insist that the document in question be re-issued. There is no reason why such wording should be used; it is discriminatory and not permitted under data protection law.
Many mothers are not aware that they can defend themselves against this. The German AIDS Foundation has set up its own HIV discrimination contact point, where such incidents can also be reported. There you have the opportunity to receive advice by telephone or email.
Click here to hear Franziska's personal, who had three healthy children with HIV:
For more information on the Positive Pregnancy project and about HIV and pregnancy, click here.
New job
In principle, people with HIV can now work in any profession. HIV testing may not be required during pre-employment medical examinations (apart from a few exceptions which, according to current legal opinion, only concern professions involving surgical activities). You may also not be asked about your HIV status in a job interview. If this happens (illegally) you have the right to answer the question incorrectly without fear of consequences.
However, there is one small exception: if you work in a profession that requires you to travel on business to countries where you have to declare your HIV status when entering the country. In this case, your employer has the right to ask you about your HIV status when hiring you. An example of this is an airline pilot. This does not, of course, restrict the job performance.
If you tell your employer that you are HIV positive, he or she is not entitled (and certainly not obliged) to inform your colleagues about it. You have a right to the protection of your privacy, and this includes the confidential treatment of personal health information.
Openly dealing with HIV at work
It is up to you whether or not to tell your employer or colleagues about your infection. However, it is a good idea to think carefully about how you want to handle this information in the work environment before starting a new job, as there are advantages and disadvantages that need to be weighed:
You may be one of those people who feels comfortable talking openly about your HIV infection and knowing that your HIV status is not a secret at work. This can obviously be a big relief. On the other hand, some colleagues may not cope with your HIV status in the way you would like, and you may become the subject of gossip or be ostracised by your colleagues.
Only you can judge whether you are willing to take that risk. In any case, you are not obligated to share your HIV diagnosis at work.
- If you feel that you are being disadvantaged or discriminated against because of your HIV status when applying for a job or in your professional life in general, you can contact your local AIDS help centre or the anti-discrimination office of the German AIDS Foundation. For more detailed information, see the section "Report discrimination".
However, it is often best to first share your HIV diagnosis in private. If you do, you will have a safe environment with trusted people where you can take the first steps in talking about your HIV status and some basics about HIV. Over time, you will gain confidence and be able to widen the circle of people you share you status with, if you choose to do so.
For more information on how to deal with your HIV diagnosis in the workplace, see the sections "Are you obligated to share the news?" and "What's the best way to share the news?".
There is now a large-scale initiative to promote a more natural approach to HIV in the workplace. With #workingpositively —an initiative by the German AIDS Foundation—employers and employees work hand in hand to ensure non-discriminatory treatment of HIV-positive people at work.
Reaching retirement age
With modern HIV treatments enabling people to live long, healthy lives, HIV-positive and HIV-negative people are entering a very special new phase of their lives: retirement. Are there any special considerations for people with HIV? In brief: no. Regardless of whether you make contributions to statutory or private pension, in both cases, your HIV diagnosis is irrelevant and you have the same pension entitlements as people who do not have HIV.
If HIV treatment is started early and taken consistently, people with HIV can usually achieve and maintain a state of health that is good enough to enable them to work normally until the statutory retirement age. Those who do not want to do this and instead plan to retire from working life earlier have the option, just like people who don't have HIV, of taking early retirement in return for a corresponding reduction in monthly pension payments (early retirement).
Some people with HIV still have other chronic diseases or do not feel fit enough to work until the normal retirement age for other reasons. In this case, there is old-age pension for severely disabled people (often referred to as early retirement pension). The requirements for applying for this pension are:
- You have reached the age limit applicable to you (between 60 and 65 years, depending on your year of birth)
- You have been awarded a degree of severe disability of at least 50 percent
- You have paid into the statutory pension insurance for at least 35 years
You can find more detailed information on this and all other questions relating to pensions and retirement planning options here:
You can also obtain personal advice on pensions and all other social law issues via the services of the HIV counselling centres.
Separation from a romantic partner
HIV-positive people can now lead a normal life. This means that anything that happens in other people’s lives can happen in their lives. This may also include separation from your partner. The only special thing is that, in addition to all the other reasons that can lead to people separating—unmet expectations, breach of trust, different ideas about joint life, growing apart, to name but a few—HIV itself can also be a reason for separation in certain cases.
A lot of progress has been made in the last few decades to educate people about HIV and AIDS. Nevertheless, there are unfortunately still many people who are not well informed about HIV and especially about the modern treatment options and therefore do not want to have a relationship, especially a sexual relationship, with an HIV-positive person.
What can I do?
The only thing you can do in this situation is talk to the person concerned, in this case your partner, and try to settle their fear of HIV or their concern about becoming infected with the virus themselves. You can find advice on how to have this conversation in the sections "What's the best way to share the news?" and "Breaking down prejudices".
If your partner still has reservations, the best thing to do is to accept that this is his or her personal decision and to let go. HIV is and will continue to be an integral part of your life. It is important for you and for the success of your treatment to have a partner who also supports you in dealing with your HIV diagnosis.
Even though separations are usually painful and sad, don’t bury your head in the sand, but use your changed circumstances as an opportunity to reinvent yourself. Talk to people who are in the same situation as you, for example in regional HIV networks. Here you can find advice and ideas on how to deal with separations and broken friendships. You may also find new friends by talking to other people with HIV.
Life goes on
What if you are ready to fall in love again? Be happy; it shows that you have overcome the separation and are looking towards the future again. Maybe you are unsure how to deal with your HIV diagnosis when looking for a new partner. When is the right time to share you are HIV positive? Would it be better to lay your cards on the table right from the start or to wait a bit?
This is not an easy question to answer, but we have included some suggestions and ideas in the section "Being open with your partner".
Other chronic diseases besides HIV
Thanks to advances in modern medicine, HIV is no longer considered a death sentence, but rather a chronic disease that, with appropriate treatment, can lead to a healthy, long life. If they receive successful HIV treatment, people with HIV today have a normal life expectancy. This means that, like everyone else, they are able to deal with the common issues of ageing. This also means that people can develop other chronic diseases in addition to HIV.
Causes of other chronic diseases
The occurrence of other chronic diseases in addition to HIV may simply be due to the higher life expectancy of HIV-positive people today. People who reach a higher age as a result of successful HIV treatment are also more likely to develop certain diseases that mainly occur in older people, such as cardiovascular diseases or metabolic diseases such as diabetes.
Determining the cause of diseases is a very complex issue. In addition to age, many other factors can also play a role. Some of them have something to do with personal lifestyle (too little exercise, unhealthy diet, not enough sleep, smoking, etc.) In other cases, there is a genetic predisposition that may be associated with an increased risk of developing certain diseases. Everyday stress or the increased intake of certain pollutants can lead to chronic diseases in the long term. There are a large number of possible (and not always easily identifiable) influencing factors and all of them affect HIV-positive people in the same way as HIV-negative people.
However, the occurrence of chronic diseases can also be directly related to HIV infection. With the therapies available today, the HIV virus can be successfully suppressed, but not completely eliminated from the body. This means that the immune system is protected as much as possible by the HIV drugs, but is still constantly working at a low level to attack the virus as an unwanted intruder and render it harmless.
This constant work of the immune system leads to chronic inflammation, which in turn can cause the immune system to age more quickly. The result is that some of the body’s own repair processes can come to a halt, which can, among other things, promote cardiovascular diseases or a decrease in bone density (and thus an increased risk of bone fractures).
Dealing with other chronic diseases
There are a number of diseases that have been shown to be more common in HIV-positive people than in people not living with HIV. These include chronic obstructive pulmonary disease (COPD) or other chronic respiratory diseases, coronary heart disease (CHD) or anaemia.
HIV-positive people should therefore be particularly alert to physical changes and have their general health checked regularly by their doctor, for example as part of the recommended check-ups and preventive examinations.
If HIV-positive people are diagnosed with another chronic disease, it is important to have these treated as consistently as the HIV . This is the only way to maintain a stable state of health in the long term. In addition to regular exercise and a balanced diet, it is advisable to have a look at the latest HIV treatments in order to prevent the onset of secondary diseases at an early stage and to maintain good health in old age. The choice of HIV treatment can also minimise certain risk factors that influence the development of chronic diseases, sometimes maintaining long-term physical health and a high quality of life.
Possible interactions with HIV medications
In such a situation, close coordination with the HIV specialist is important. He or she should always have a complete overview of your current health status and know exactly what other medications you are taking in addition to your HIV medications.
Not all medications for chronic diseases can be effectively combined with HIV medications. Some medications can reduce or increase the effectiveness of HIV medications – which can then either lead to HIV treatment no longer being effective enough or to the occurrence of undesirable effects. Conversely, HIV medications may also reduce or increase the effectiveness of other medications. In both cases, we speak of interactions between the different medications.
Image: The two aspects of drug interactions
- In order to assess whether such interactions may occur between your HIV medications and other medications, your HIV specialist must have a precise picture of what other illnesses you have and what medications you are taking overall. It's best to make a list or take the packs with you to your doctor's appointment so you don't forget anything. However, one thing is clear: the fewer different medicines you have to take, the fewer interactions there are, both in the number of medicines in your HIV treatment and in the treatment of your co-morbidities.
If it turns out that your HIV medicines and medicines for another condition cannot be combined, your HIV specialist will discuss the best course of action with you. Your doctor may advise you to switch between medicines, either for your HIV treatment or for your other condition, in order to successfully treat both your HIV infection and your other condition. For more information on interactions, see the section "Individual adaptation of treatment".
Living a long and healthy life
Of course, nobody knows exactly what will happen in ten years. When it comes to the future of HIV treatment, statistics are our friend, and here is a good indication: thanks to effective treatments, people with HIV can now live just as well and as long as people without HIV. Medical progress in HIV treatment has made it possible for the treatment of an HIV infection to no longer be primarily about ensuring survival, but rather about achieving and maintaining a good quality of life with HIV.
This is now becoming increasingly successful, because modern HIV medications usually have few side effects and if any occur, they are usually easy to treat. Research into new active substances and therapies is also continuing to be able to provide many individual and innovative treatment options for people with HIV in the future.
Take care of your own health
However, HIV medications are only one aspect of your health – albeit a very important one. If, in addition to taking your medication regularly, you are living a healthy lifestyle, you will support your immune system and make an important contribution to the long-term success of your HIV treatment. Actually, there is a lot to suggest that you will be doing well in ten years.
Will a cure be possible?
Will it be possible to actually cure HIV by then? Or to put it another way: will there be new medications that will completely remove HIV from the body, thus transforming HIV from a manageable chronic disease into one that can be cured? Unfortunately, this question cannot be answered today. Intensive research is under way to achieve this goal.
Until then, one thing is certain: the modern HIV treatments available today enable people to live long, healthy lives with a good quality of life. They give HIV-positive people the perspective of a life in which HIV no longer plays a major role, but only a supporting role.
We wish you all the best!
References:
- Eisinger RW et al. HIV Viral Load and Transmissibility of HIV Infection: Undetectable Equals Untransmittable. JAMA 2019 Feb 5; 321(5): 451–452.
- Guidelines of the European AIDS Clinical Society (EACS), version 12.0, last updated on October 2023. https://www.eacsociety.org/ guidelines/eacs-guidelines/eacs-guidelines.html.
- Positive Perspectives Survey. 2017 Data on File
NP-DE-HVU-WCNT-250003 – February 2025
