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Letter to a Younger Generation

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An Ounce of Prevention is Still Better than a Pound of No Cure

 

There is no denying that the message today is one of hope and optimism for anybody newly diagnosed with HIV. With governments upwardly revising average life expectancies for those living with HIV and the new, albeit subtle, agenda of pushing towards “normalization” in HIV patient care here in the UK, it’s hard not to be optimistic, right?

There is certainly plenty of undeniably positive news stacked on the plus side of that argument, but in order to answer that question and emerge with a truly balanced view of the current situation let’s not forget to take a closer look at the other side of that ledger, too. Certainly, no one could argue that recent advancements in treatment represent significant milestones on the road toward an eventual cure. Reported progress on vaccines and clinical trials seem more promising now than at any point during the 30 year history of the disease and cause for optimism indeed; but it is not quite, perhaps, time for complacency. The notion of having reached a place where we can regard HIV as merely one of the many diseases considered manageable these days is indeed an enticing view of where we would like to see ourselves, and who could blame the Government for latching onto and promoting that view of the situation? Often overlooked, however, is that unlike many other manageable conditions, HIV is only manageable for those able to tolerate the often adverse side effects caused by—and let’s be honest here—the quite toxic combinations of medications that are needed to suppress the virus.

The side effect profiles for many of the drugs are quite lengthy, and the impact of many of those side effects on the quality of life can, in a not inconsequential number of cases, be quite disruptive to those who experience them. Certainly the prospect of working towards or achieving any kind of normal life or feeling like the condition is “managed” from anything other than a purely clinical perspective can often seem far from reality for those affected. That managing the disease can for some mean a life dealing with complications such as diarrhoea, dizziness, nausea, fatigue, decreased concentration, etc., fails to register a mention in the messages of hope, and is far cry from anything that might resemble a normal quality of life. In many cases the long-term side effect profile for many of these drugs still remains quite unclear.

It is also probably worth mentioning here the psychological affects, too, that go along with a lifetime of dependence on medications in managing the condition. Yes, it is quite true that many manageable conditions come with medications, but rarely is the impact of not taking that medication or skipping doses as severe as in the case of treating HIV. As someone put it to me the other day, “unlike other manageable conditions, if you stop taking your HIV medications you’ll die”. Many of those living with HIV who have started treatment find ways to cope with the anxiety brought about by the possibility of viral resistance resulting from missed doses in a pretty unforgiving dosing regimen; others simply don’t cope too well with the worry. Adherence to the dosing schedule is strict, and missing doses is too often not the result of carelessness; many of the side effects can make it quite hard to keep the medications down at times. For some, this Sword of Damocles erodes any optimism and can make every visit to see a doctor a time of anxiety while awaiting the results of their latest blood test to discover if the virus has become resistant to current treatment. It is probably difficult to imagine the mental strain that is also brought about if that happens, and the patient is faced with the uncertainty of knowing what salvage treatment options may or may not exist, given that resistance can often be to an entire class of medications. The constant anxiety about dosing and viral resistance, with other fears about practical issues faced in determining what level of commitment can reasonably be offered to employers, partners and family members in these circumstances can often leave many HIV positive people living with mental health problems such as anxiety and depression.

Most living with HIV would like to believe the messages of hope and accept the portrayal of a normal life, but for many there is simply no denying that there is nothing normal about living a life so dependent on and affected by medication. Add to that the fairly recent pressure of being measured against a de facto standard of “normalcy” when trying to access benefits or employment and the situation intensifies. Consider for a moment the many living with this condition who find themselves trapped in benefit cycles simply because they were diagnosed at a time when having HIV was considered a death sentence. It is certainly wise to review on-going eligibility for benefit claimants in all cases, but where continued eligibility is denied one would expect practical support be offered to those who no longer have the skills or work history to access employment simply because they were written off in times when optimism about the disease was not quite so high. Unfortunately, in many cases those currently empowered to make such decisions often have no real understanding of the disease, its progression, treatment, and certainly not of the psychological and mental health impact on the individual. Those who find themselves in this situation often feel frustrated as they see the terms of the social contract they entered into during less optimistic times, when they were encouraged into a life of benefits, gradually being renegotiated under the guise of economic austerity.

The messages of hope and optimism certainly have not failed to reach the ears of those who control the purse strings. Even if we accept the “manageable condition” argument, we must wonder how we might ever hope to reach a point of cure in these circumstances, not to mention what support we are providing to those whose condition is being managed in the interim. One might conclude that it is a somewhat myopic strategy to cut funding to those responsible for promoting messages of Prevention and in areas of Research when you consider the cost of a lifetime of managed care for an HIV patient.

It is probably also worth taking a moment or two to contemplate a scenario of managed care and long-term survivability. Healthcare services for those living with HIV today are provided almost exclusively at Sexual Health/GUM clinics or specialist clinics within hospitals which are often managed quite separately from the general healthcare needs met by GPs.  It is hard to imagine, therefore, how that model could be sustainable over the longer term, and how the complexities of managing HIV in parallel with the normal conditions associated with ageing might be coordinated effectively. One might question how well the health service is positioned and what is being done to cultivate a support infrastructure capable of managing complex medical treatment and meeting the needs of an ageing population of HIV positive patients. For those living with the disease it is hard to imagine how any group who has for so long been managed separately—with the added stigma of being treated as part of Sexual Health programmes—could consider themselves “normal”, especially when access to the very care and management of their disease is treated by those institutions as highly specialized, stigmatized, and so separate from mainstream healthcare.

Setting aside the impact of side effects and healthcare management, it might come as a surprise to some that many young people and members of other at risk groups today present a shocking indifference to the prospect of contracting HIV. Judging by the language used to describe HIV, often described as “no longer a death sentence” or “manageable these days” by those groups, it is clear that they are paying attention to the current messaging which seems almost to trivialize the impact of HIV in their minds. The unfortunate, unintended consequence is, perhaps, that so many then needlessly expose themselves to the risk of contracting HIV, in no small part because they do accept the message that’s out there that it simply is nothing to be feared these days. If you consider that during the course of the last year the number of overall cases of new HIV diagnoses in the UK has been the highest ever, you have to wonder why those at risk seem more inclined to let down their guard now. Some might argue that the increase is a result of greater access to screening, but certainly that fact that many no longer view HIV as a threat simply must play some role in driving those behaviours that carry the highest risk of transmission.

At the end of the day nobody would argue that from a purely clinical perspective an HIV diagnosis today is not as grim as it once was for most, and for most the quantity of life in terms of overall life expectancy is better than ever. It is also quite true that the range of treatment available to those living with HIV today is better than ever before, and I applaud those professionals who offer messages of hope and optimism to the newly diagnosed; it is certainly a huge leap forward that there is treatment available that can help them live longer. Let’s not be quite so swift, however, to infer from that that the time has come to give up the fight for a cure, and let’s not blindly accept that an increase in the quantity of life for those living with HIV does not come with a pretty steep toll for some in terms of overall quality of life. And, perhaps most importantly of all, while it is right to reassure the newly diagnosed that there is reason for hope, optimism and a chance to lead a more normal life than was the case in previous years, let’s not allow those messages to come at the expense of the Nation’s young or other groups who are most at risk of transmission: they are listening, too.

A BPHER Member

www.bpher.org

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Full Text: Letter to a Younger Generation

 

 

 

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