Living with HIV: Not the end of the road
With more affordable effective treatments available, an open patient-doctor conversation on optimising treatment is the way forward for people with HIV to achieve quality of life.
Like any medical condition, getting diagnosed and having access to the right treatment are an important part of the journey for people living with HIV. However, taking this first step can be challenging for some, with stigma taking a heavy emotional toll.
According to the Positive Perspectives survey that looked into the lives of 1,111 people living with HIV from nine countries, around four in five (83 per cent) respondents shared that their diagnosis had a negative impact on their emotional well-being.
More than four in five reported experiencing a form of stigma related to their HIV condition in the last 12 months while 27 per cent stated that they have feelings of self-blame and guilt or see the need for secrecy about their condition.
According to infectious diseases doctors, misconceptions about the disease may be the reason why some patients are hesitant to speak about their condition and seek treatment. Dr Ling Li Min, an infectious diseases physician at Mount Elizabeth Novena Hospital, said often times, empathy is lacking for people with HIV as the infection is viewed as “self-inflicted”.
“Many people think of HIV as a social problem of impropriety and uncontrolled sexual urges. But the truth is that anyone who has had sex is at risk of HIV,” added Dr Leong Hoe Nam, an infectious diseases expert at Mount Elizabeth Novena Hospital.
WHY A POSITIVE DIAGNOSIS IS NOT THE END
While a positive HIV diagnosis can be overwhelming and distressing, experts say it does not mean the end of the road for patients.
For one, treatment has improved by leaps and bounds over the past decades.
“If people on HIV treatment take their medications properly, they can look forward to a normal life expectancy and have children if they choose to,” Dr Ling said. With advances in treatments in this day and age, a patient might require as few as one pill each day and experience minimal side effects, she added.
Dr Leong said: “With HIV treatment, the immune function of the patient is reconstituted. The very defect created by the virus is repaired and life can go on almost normally again. The only difference is the need to continue taking the medication.”
MORE AFFORDABLE HIV TREATMENT
With the recent inclusion of HIV medications to the Ministry of Health’s (MOH) list of subsidised drugs, treatment has also become more affordable and accessible for people in Singapore living with the disease.
As of Sep 1, 2020, MOH has added 16 antiretroviral drugs used for the treatment of HIV to its list of subsidised drugs as well as the Medication Assistance Fund. Subsidised patients who purchase any of the 16 drugs will be able to receive a 50-per-cent or 75-per-cent subsidy.
Dr Ling said that recognising HIV as a chronic infection is “a huge milestone”. While cost used to be a big consideration for patients, Dr Leong said that the current subsidies will remove barriers to receiving appropriate medical care and that many highly effective HIV medications are among those in the list of subsidised drugs.
“The only barrier is the patient’s mind. They must have the resolve to want to be treated and overcome the stigma,” he added.
OPEN PATIENT-DOCTOR CONVERSATIONS IMPORTANT
A total of 220 new cases of HIV infections were reported among Singapore residents in the first 10 months of 2020, according to Ministry of Health figures. 58 per cent of the newly reported cases were detected during the course of medical care for other conditions. Of 125 cases reported in the first six months of 2020, 54 per cent had late-stage HIV infection at diagnosis.
The experts said current treatment options available can help people living with HIV effectively manage the disease with minimal side effects and even live their life without fear of transmitting it to others.
However, the key is to seek treatment early and openly discuss with their doctors on the treatment that works best for them. The earlier the treatment, the easier it is to treat the condition, Dr Leong said. Data collected from the Positive Perspectives survey shows that a significantly higher percentage (88 per cent) of patients newly diagnosed with HIV (from 2015 to 2016) started treatment within six months of diagnosis compared to those diagnosed before 2006 (40 per cent).
However, some people, especially those who are newly diagnosed, may not be comfortable with raising issues of concerns with their family doctor.
Based on findings from the Positive Perspectives survey, 93 per cent of HIV patients have told their doctor about their condition. However, the survey also shows that while 72 per cent of people living with HIV worry about long-term effects of HIV treatment, only 13 per cent of this group consider speaking to their doctor as a solution for their concerns.
NO ONE-SIZE-FITS-ALL TREATMENT
Dr Leong said HIV has a long incubation period and each individual seeking treatment is at a different stage of the disease.
“Using a one-size-fits-all treatment doesn’t work,” he said.
Tailored for each individual, a course of treatment involves looking into the patient’s lifestyle, severity of the condition and conducting tests to check and treat any other infections.
Sometimes, this may mean using different drugs to suit the genetic makeup of an individual or prescribing a different regimen to better fit the preference of the patient, Dr Leong said. Those who require additional counselling or financial assistance for testing and treatment are referred to medical social workers, Dr Ling added.
Dr Ling said while most patients are usually started on the same type of first-line medications, adjustments may be made along the way, depending on the side effects of the HIV drug or an individual's HIV drug resistance profile. Some people may experience side effects while taking HIV medications. Common ones include nausea and vomiting, dry mouth, difficulty sleeping, headache and fatigue, according to the US Centers for Disease Control and Prevention (CDC).
The CDC website stated that drug resistance may also develop when people with HIV are inconsistent with taking their prescribed medication. The virus can mutate and may no longer respond to certain HIV medication, and this limits the options for successful treatment.
According to Dr Leong, effective HIV treatment would mean successful control of virus replication to undetectable levels, which is defined as a viral load of under 40 in 1ml of blood.
“In this situation, there is no risk of transmitting the disease to anyone, even during unprotected sex,” said Dr Leong, emphasising that “unprotected sex” here refers to that in a monogamous relationship. “We do not encourage sexual promiscuity as besides HIV, there is a risk of contracting other sexually-transmitted diseases as well.”
“TOO LATE“ WHEN SIGNS OCCUR, SAYS EXPERT
For people who have trouble adhering to their HIV medications or are experiencing side effects, it is advisable to talk to their doctors to optimise their treatment plan.
Dr Ling said: “Most patients do not have signs that their current treatment is failing, therefore it is important to have regular follow-up with their doctor.”
Dr Leong warned that it is often “too late” by the time signs appear and urged patients to comply with their medications. “There is a long lead time between the virus reactivating and signs developing,” he said, adding that having regular blood checks is a better and safer way to ensure that the disease is under control.
Said Dr Leong: “When the disease advances, immunity weakens. Once it crosses a certain severity, the immunity may never be normal again. Early diagnosis and appropriate treatment at an early stage can negate this and restore a person to good health quickly.”
For people living with HIV, taking charge of their condition and treatment is key. While it might seem daunting at first, having an open and honest conversation with their healthcare team on optimising HIV treatment can help them achieve a good quality of life.