Sabbatical Update: on my return from my beloved country

Is it time to formulate an essential drug list to treat MS in the developing world? #MSBlog #MSResearch

“As I get older I realise that almost every extreme position is wrong. This observation is not unique to religion or politics, but is applies to science and many other areas as well. It is the moderate thinker; the person who can assimilate both sides of the argument and steer a middle course that gets things right. We need to get things right.”

“When I visited the Steve Biko Hospital in Pretoria there was an internal debate going on about the WHO essential drug list. The hospital administrators’ are planning to reduce the list to save on costs. This underscores the dire straits of state health in South Africa. Who is to blame? It is clear that managing the HIV epidemic has destroyed the state healthcare system. Could things have been done differently?”

“In 1990 after completing my medical training I was conscripted into the South African Medical Services (SAMS), a division of the South African Defence Force (SADF). As I was married I was posted to the SAMS headquarters, in a suburb of Pretoria, formerly known as Verwoedberg and now Centurion, to run the epidemiology unit. One of studies I was ordered to help write-up was a seroprevalence study of HIV in a special unit that recruited its members from the black and mixed race populations of South Africa. The HIV seropositivity rate in the new recruits to this unit was a startling 3%; please remember this was back in 1990. In parallel a close friend of mine from medical school, who was working as an occupational health doctor on one of the gold mines in South Africa, did a similar study on their new intake of miners and found almost identical results to us in the military. Using an open source program from the CDC (Centre for Disease Control) I modelled the HIV epidemic in the feeder populations and ended up with a predicted peak seroprevalence rate of approximately 30%. We presented our report, which was top secret at the time, to the Surgeon General and three other top-ranking military officials (all were generals). I recall us concluding that as HIV was being sexually transmitted heterosexually in these populations that an urgent, large scale, education programme was needed and targeted preventive measures should be implemented and studied.”

“The epidemiology unit had also been collecting data on other sexually transmitted diseases (STDs) in the defence force. This particular unit, with the 3% HIV seroprevalence rate, had an appalling rate of other notifiable STDs. For example, I recall us receiving 32 notifications for gonorrhoea from this unit in one week, whilst they were away on a training exercise in a remote area of the country. When I sent-out a team to investigate the outbreak we tracked down the source of infection to two local prostitutes. The bottom line was that this particular unit were very promiscuous and displayed high-risk sexual behaviour. The situation in the South African mining industry was no different. Miners were almost all migrants with access to very cheap alcohol and prostitutes; a toxic mix. The mines had a similar problem with endemic rates of other STDs. My friend, the occupational health doctor, complained that the mining houses would bus in prostitutes from Johannesburg on Friday to service the miners over the weekend. The mining houses also subsidised cheap alcohol. The mix of single men, or men separated from their wives, alcohol, prostitutes, endemic rates of other STDs and other cultural factors, for example black South African men rarely used condoms in the 1990s, ignited the HIV powder keg that exploded to become the worst HIV epidemic on the planet. Men infected on the mines, or in the military, then infected their partners on their return to their homes and over the next 20 years the incidence of HIV skyrocketed.”

“Unfortunately, our HIV report never saw the light of day. Our recommendations were either ignored or swept under the carpet. I left the military at the end of 1990 with a special commendation from the Surgeon General; a prestigious award for my contribution to the South African military. I have always wondered if our HIV report, which I help prepare for the Surgeon General was the reason why I got the award. During my year at SAMS HQ I got to know the Surgeon General very well; I would meet with him weekly to go through my weekly epidemiological report. He was a liberal man with integrity, vision and a conscience. I respected him. I am sure the decision to ignore the South African HIV epidemic was not his decision; he agreed with everything we said and was very concerned about the potential ramifications of HIV for South Africa. I suspect the decision to ignore the HIV epidemic was probably taken by people higher-up in the military and the South African government at the time. The mining houses behaved slightly differently; they did act, but much later when it was too late.”

“The sad thing is we got it wrong the peak rate of HIV infection in South Africa is much higher than 30% in most of the communities affected by the epidemic. The CDC model clearly did not take into account cultural and other factors when modeling its prediction. Similarly, the model did not include a complacent government who went into a state of denial about HIV.”

“The sad consequence of these mistakes is that MSers and people with other chronic diseases have to rely on a health system that has been brought to its knees by HIV. I have been torturing myself this last week and asking is there anything I can do to help? How would I manage MS in the state sector in South Africa? Would I simply shrug my shoulders and let MS devastate and shred the brains of MSers living there without trying to do something about it?”

“I therefore plan to formulate an essential drug list, and a series of treatment algorithms, for my South African colleagues in the State sector to use to treat South African MSers and other MSers living in developing countries with lack of access to high-cost drugs. The drugs on this list will by necessity be off-label, out-of-patent and cheap. I will not compromise on the goal of treat-2-target of NEDA (no evident disease activity). Big Pharma won’t like it, but they have to realise that neurologists in developing countries have their backs against the wall and their priority has to be the patients in their care. I am acutely aware that innovation costs money and that Pharma needs to recoup their investment and make profits for future cycles of innovation. But until fingolimod comes off patent, the first small molecule drug to do so,  a large number of MSers the world over are in desperate need of DMTs. We/I can’t ignore them; we need to get things right.

“There is place in Kwazulu Natal called Ixopo it is most famously described by Alan Paton in the opening lines of Cry, The Beloved Country: ‘There is a lovely road which runs from Ixopo into the hills. These hills are grass covered and rolling, and they are lovely beyond any singing of it’. The HIV seroprevalence rate in Kwazulu Natal is close to 40%; this is a national tragedy for so many reasons.”

24 thoughts on “Sabbatical Update: on my return from my beloved country”

    1. Re: "How is your mother doing after her surgery?" Very well she is mobilising on a Zimmer frame with very little pain. Thanks for asking.

    1. Re: "Why fingolimod? Interferon-beta and Copaxone will be off-patent sooner."When biologicals come off patent the price rarely drops much. The entry level for biosimilars is so much higher than small molecules. The launch of a biosimilar may bring the price down by up to 30% compared to over 90% for small molecules. This is why Pharma are so keen to get into biologicals.

  1. I would've thought it's more likely to be rituximab or IV cladribine if you're looking for NEDA. Maybe LDN

    1. Re: "I would've thought it's more likely to be rituximab or IV cladribine if you're looking for NEDA. Maybe LDN"Rituximab is too expensive. Cladribine will be on my list (Class 1 evidence), but not LDN (too little evidence).

    2. These treatment algorithms are very much needed, thank you for thinking of it. Re "Big Pharma won’t like it" – maybe they won't, or maybe they won't mind. Because at current prices the MS drugs don't sell much in developing countries anyway.I think you should include Rituximab too in the algorithms. At least in India it costs much less than the official MS drugs and I can't understand why more MSers aren't using it. Probably because the doctors hesitate to prescribe off-label.The reason it is relatively affordable is that a big Indian company introduced their own version, mainly for cancer use. Since then Roche has also reduced the price in India. Now the original and the copy are much closer in price and both are selling. "In 2007 Dr. Reddy’s launched the first generic rituximab in India at approximately 36% of the innovator’s price. In the following years the average price of rituximab, in India, has fallen significantly. In 2009 the average price for rituximab had fallen to 36% of innovators pre-generic entry price (2006). Over the same period the number of units of rituximab sold has steadily increased. In 2009 the number of units of rituximab sold had increased approximately 6 times that of sales in 2006. This increase in number of units sold indicates a rise in the number of patients being treated with rituximab. The primary reason for this being a significantly larger percentage of patients can now afford the therapy"

  2. How frustrating and awful that you and others did that work and that it didn't lead to the appropriate action being taken. I'm glad you have come up with a pragmatic way to help, now. But it is devastating that resources could've been expended earlier and prevented many deaths as well as enabled the SA health system to remain standing instead of on its knees.

  3. South Africa has enough money to stage the World Cup but not enough for DMTs? Sounds to me the nation's priorities are skewed.

    1. What is the reason for the lack of treatment in the UK? Is the medical community divided on the benefit of DMTs, are patients unwilling to adhere to treatment, or is there inadequate funds for drugs? If it's is the latter then the government has decided it is cheaper to allow progression rather than treat 🙁

    2. Mousedoctor are you including all patients with MS in your percentage? People that have tried DMTs, but couldn't tolerate it, SPMS and those that don't want them. I don't think you can compare FIFA with London 2012. You must know that East London needed regenerating and there is a legacy that benefits the communities, you work in the area.

    3. Numbers based on MS Society survey MS Care lottery.The commenter questioned the state of affairs in South Africa, I was just pointing out that UK can do a lot better too.As to London 2012, it was a great experience…I could not really get any tickets for the olympics, like most Londoners, although we will be paying for it for the next few years but loved the paralympics.Don't set get started on FIFA and Qatar 2022:-)-how many deaths doing building work so far? But that's another story

    4. Maybe I should ask the question to the MS society. It makes a big difference to the percentage. That's why if we don't know the whole story, the figures are meaningless. Too much is based on the statistics and it is how easy it is to manipulate trials. This is not a dig at you Mousedoctor just a comment. I paid and couldn't get to 2012 because the disabled ticket line kept cutting me off, but I paid for it too. It's still there for ordinary people to use not just the wealthy.

    1. Re: "just give them ARTs if you believe your own work"Science is not about beliefs, by hypotheses that you can test. Beliefs are for the religious.

  4. Re 'Big Pharma won't like it': Let them not like it. For example, if it had been left to big Pharma who knows how many more people would have died of AIDSThe link is an interview with a Medecins Sans Frontiers pharmacist about generic HIV/AIDS drugs:"international trade rules required India to start granting patents on pharmaceutical products only after 2005. Until that time, Indian companies were able to manufacture generic versions that competed in price not only with brand name companies but also amongst themselves to bring down the prices of AIDS drugs drastically. This is what allowed the price of treatment to drop from over US$10,000 ten years ago to less than US$80 today.What’s more, it has been possible for them to create fixed-dose combination pills of these generic antiretrovirals—essentially two or three pills in one—that have been hugely influential in simplifying AIDS treatment and making treatment more practical in developing countries where we work. Imagine, we can offer a patient one pill once a day rather than a handful to be taken at different times of day. Some of these fixed-dose combinations don’t even exist in rich countries precisely because of the patent barriers that exist there. "

  5. A sad story about the plight of South Africa. Let's hope your South African colleagues adopt your recommendations. I suspect many are under the influence of Pharma and will not agree with you. Have you thought about that?

  6. " I recall us concluding that as HIV was being sexually transmitted heterosexually in these populations that an urgent, large scale, education programme was needed and targeted preventive measures should be implemented and studied." Apartheid was on its way out in the 1990's but one wonders how it contributed to the epidemic, i.e. failure of government to implement policy to control HIV in its infancy.

    1. I'm sure the stance of Thabo Mbeki didn't help either. An advocate of herbal cures/traditional medicine as I remember.

    2. This stems from the prominent cancer retrovirologist Dr. Peter Duesberg at the University of California -Berkley who denies that HIV is the cause of AIDS in the controversial book "Inventing the AIDS Virus" 1998.

  7. What a thoughtful reflection of the missed opportunity to treat as well as prevent the increased devastation of HIV. While the total numbers of MSers in South Africa will not approach near that number of lives affected by this lack of action for HIV treatment and education, it is no less significant to that one person with MS who faces this future without treatment options.Thank you for being forward thinking (Again) and continuing your efforts to be helpful in shaping care that would otherwise be out of reach. Good luck with completing this list and

  8. Posts like this put things into perspective and make me realise just how fortunate we are to have the NHS. Good luck with the work you're doing Prof G. I'm sure its making a difference.

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