Below are crucal facts regarding Hydroxychloroquine and it's connection with Lupus.
As essential drug
Hydroxychloroquine is among anti-malarial drugs that is used to treat lupus. These medications are usually prescribed when someone is first diagnosed with the disease. They have been in use since the 1950s and their effectiveness in treating the symptoms of lupus have been proven. Specifically, lupus patients get relief from pain in their muscles and joints, skin rashes, pericarditis (inflammation of the lining of the heart), pleuritis (inflammation of the lining of the lungs), and other lupus symptoms such as fatigue and fever (John Hopkins Lupus Center, 2020; https://www.hopkinslupus.org/lupus-treatment/lupusmedications/antimalarial-drugs/).
The anti-malarial drugs are also used in treating discoid lupus, subacute cutaneous lupus, and mouth sores associated with lupus; they are also effective in treating rheumatoid arthritis and Sjogren’s syndrome. These are conditions that lupus patients may also suffer from. When organs are involved (for example kidneys, nervous system and blood involvement), on top of these anti-malarial drugs, doctors use immunosuppressive medications in order to minimize the damage that may occur, with Prednisolone being one of the drugs used, and others are Methotrexate, an anti-cancer drug. Determination of which one each patient uses is done jointly with their doctors depending on their presentation and side effects (https://www.lupusuk.org.uk/what-is-lupus/).
Other benefits of the anti-malarial drugs are: preventing the disease from spreading to organs, such as the kidney and central nervous system (brain and spinal cord). More importantly, it helps to reduce flares by as much as 50%. Anti-malarial medications help to control lupus in several ways by modulating the immune system without predisposing the patient to infection. Anti-malarials can protect against UV light and sometimes even improve skin lesions that do not respond to treatment with topical therapy (ointments) (John Hopkins Lupus Center, 2020; https://www.hopkinslupus.org/lupus-treatment/lupusmedications/antimalarial-drugs/).
Regarding the treatment plan, the use of HCQ aims at reducing the flares. The use of HCQ, which is the key drug that is prescribed, depends on the condition, with sometimes one or two tablets of 200mg of HCQ being taken to reduce the flares. Once the flares are reduced, which takes a while since HCQ takes long to kick in, the patients face less attacks on their 3 organs and other areas that the disease attacks. It can even go to the extent where some drugs can be removed once the immune system balances or cools down, especially the steroids, or reduced to a very small dose. It is clearly a very important drug that lupus patients need to take to lead a relatively pain-free existence. Studies have found that lupus patients who take anti-malarials live longer than those who don’t (Alarcón et al. 2007, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1955128/; John Hopkins Lupus Center, 2020; https://www.hopkinslupus.org/lupus-treatment/lupus-medications/antimalarialdrugs/).
Clearly, HCQ and other anti-malarials are important drugs that help in controlling lupus in the long term. What is important is that some lupus patients may be on these drugs for the rest of their lives, hence are considered a “lupus life insurance” John Hopkins Lupus Center, 2020; https://www.hopkinslupus.org/lupus-treatment/lupus-medications/antimalarialdrugs/). The generic form of the drug, HCQ, is dispensed in Tanzania, while the original drug, Plaquenil, is not. Compared to other anti-malarial drugs, HCQ has fewer side effects. It is important to note here that some lupus patients experience side effects when they use the generic form of HCQ. The importance of having both, generic and original is evident and important.
Currently, one table of hydroxychloroquine costs TZS1000. If a lupus patient takes two tablets of 200mg daily (which most do), she/he has to spend TZS60000 per month, which translates to TZS760,000 per year!
When the COVID-19 pandemic broke out, after President Donald Trump’s statement that HCQ could cure the disease, a huge rush occurred for these drugs, through excess demand that was created, mostly from people who are not lupus patients (https://www.forbes.com/sites/stephaniesarkis/2020/04/13/trumpshydroxychloroquine-focus-causes-a-shortage-for-others/#24d36bb0539e). What resulted was a shortage of the drug, leaving lupus patients struggling to get it, and some going without taking the drug that they need on a daily basis. In countries where lupus patients are recognized as needing this drug for controlling their condition, governments helped to secure it for them, for example, South Africa, United States, the United Kingdom. The patients were easily reached through their doctors and through their support groups, and the drugs were specially reserved for them. Here, we noted that some pharmacies increased prices to take advantage of the demand, which is really unethical.
Other drugs on NHIF versus HCQ
We know that blood pressure tablets are available on NHIF, but some blood pressure patients can get better and get off the drugs through a change in life style. However, lupus patients cannot get off these drugs. They have to take the drug for life since there is nothing that they can do that cures the condition. Hydroxychloroquine helps them to live a much more bearable life. While blood pressure patients can get off their drugs through a change in their lifestyle, and their drugs are available on NHIF, lupus patients have to live with the condition for the rest of their lives, but their drugs are not on NHIF. Clearly, there is a need to consider this in your evaluation. 4 Another troubling aspect that our members would wish that you look into is the fact that most physicians are not well informed with regards to Lupus, in terms of its diagnosis and management. This being the case, most of our members have faced long periods before they are diagnosed with the condition. After that, a lot of trial and error goes into the management of the disease, which often leads to having periods of pain before the right dosage and drugs are figured out. It would really help if your Ministry could prioritize this disease and designate some physicians who can be specifically trained, either here or abroad, on this specific disease. The physicians could be sent for training specifically on managing this disease and other related essential elements involved. We believe that this could be a worthwhile investment for the future of our country. As mentioned above, it is quite possible that people may have this disease but they are not diagnosed, orthey might be misdiagnosed, and the repercussion of this is death.