Another sickle cell treatment option now available to Ugandans

By Esther Nakkazi

Today, 19th June is world sickle cell day and from this year hydroxyurea, arguably the most significant breakthrough in sickle cell treatment ever is now on the list of essential drugs in Uganda.

That means it is now more available in drug shops and that brings the price down to a third of the original price, to Ushs 3,000 per tablet from Ushs 10,000 although this does not necessarily mean its affordable and it is not yet available in public health facilities.

As well it does not mean that it will be prescribed to everybody who’s eligible as Ugandan doctors like elsewhere in the world may not necessarily want to prescribe hydroxyurea because it is given in the most maximum tolerated doses and requires continuous blood tests.

Hydroxyurea was approved for sickle cell treatment in 1998 by the FDA and was originally and it still is a cancer drug which increases healthy forms of oxygen-carrying hemoglobin, resulting in less organ damage and fewer pain crises, transfusions, and emergencies for sickle cell patients.

Specialists doctors who are supposed to treat sickle cell disease, hematologists, are hard to come by so most patients are seen by clinicians except for a few dedicated doctors like Prof. Christopher Ndugwa, a paediatrician now known to many as the ‘Uganda grandfather of sickle cell disease’. He has trained about 80 percent of the doctors who treat sickle cell disease in Uganda.

Sickle cell is a multi-organ disease. When patients get an attack they go through a vaso-occlusive crisis in which sickle-shaped red blood cells clog the vessels and cut off oxygen to joints and organs. The inadequate blood supply triggers excruciating pain, damages vital organs and causes a stroke.

Sickle cell disease has been declared a major public health problem for sub-Saharan Africa by the World Health Organization.

The intensity of the disease was unknown until a study was done which prompted action and institution of policy. Now after 20 years since its approval, the now called wonder drug to Ugandans is no longer scarce and here are some efforts that led to policy, treatment changes and action.

In 2014, the Ministry of Health carried out a survey to profile the sickle cell trait and sickle cell disease across Uganda. To date, Uganda is the only African country with current national prevalence data, which was also been published in a leading medical journal, the Lancet.

The survey found scary statistics; at 15,000 to 20,000 babies are born with sickle cell disease every year in Uganda and 80 percent of them die before their 5th birthday. It further documented a high sickle cell burden with a national trait average of 13.3 percent and a disease burden of 0.73 percent.

The research earned Uganda a reward. It was nominated to host the 6th International Symposium on Sickle Cell Disease (REDAC 2016). Mass screening, patient management, early testing, pre-marital counseling and sensitization campaigns were created.

On 16th March 2017, the Minister of Health, Dr. Jane Aceng presented a Ministerial Statement to parliament about the situation of sickle cell in Uganda. The shocked parliamentarians pledged to support it in terms of allocations of funds to the budget, creating awareness and policy.

They requested that equipment be available to screen at birth for sickle cells in all regional hospitals and a budget be allocated so that funding for sickle cell treatment is not left to donors as was the practice.

Aceng informed them that the Ministry of Health had in fact already set up a national programme to screen newborn babies and children below two years in high prevalence districts and a National Sickle Cell reference laboratory with the capacity to run 8,000 samples at ago was operational.

Aceng also appealed to the Buganda kingdom to collaborate with the Ministry and create awareness. The study showed that Buganda was one of the high burden regions with a prevalence of 20 percent and disease burden above 1.5 percent.

The Kingdom of Buganda agreed to provide support to which they accepted to use Sickle Cell Anaemia treatment drives as a theme in the Kabaka Birthday Run for the next three years.

As such the 2017 edition of the Kabaka’s birthday run launched by the Katikkiro of Buganda Charles Peter Mayiga, he equated the lack of awareness to the early HIV days. He said people referred to sicklers as 'offsprings of parents with bad blood or those that are cursed'. That year the funds from the birthday run went to support sickle cell.

More efforts continued like lobbying from civil society organizations like HEPS Uganda and now finally hydroxyurea is on the table in Uganda. However, elsewhere more treatment options are becoming available.

Endari, a nutritional supplement which has been shown to relax the stiff, sickle-shaped red blood cells of people with the disease is now the newest drug on the market. Another treatment option that still needs to go through clinical trials is CRISPR or gene editing therapy. This can be used to edit the sickle mutation in blood stem cells so they produce more fetal hemoglobin, which can reduce the severity of the disease.

It would be interesting to know if Ugandans would participate in the CRISPR sickle cell clinical trials if they got here. But all we know there is hope after all more treatment options are on the way.

Recombinants harsh to HIV vaccine development

By Esther Nakkazi

Today is World HIV vaccine day. As we celebrate the day, we have a lot of hope this time around more than ever.

For the first time in many years, four vaccine concepts are in phase IV and could give us an HIV vaccine. But even if they do not it is a still a great leap forward. Phase IV trials are conducted over a long period for a big number of people to evaluate the long-term effects of new drugs and treatments.

“If they do not give us a vaccine they will at least give us information about how it works,” said Dr. Francis Kiweewa, the head of research and scientific affairs at Makerere University Walter Reeds Project (MUWRP).

Kiweewa said we shall get to know this important information just two to three years from today in either 2020 and 2021 and that is not far off. He was speaking to journalists at their monthly science cafe organized by Health Journalists Network in Uganda, HEJNU.

But that withstanding you could ask do we still need an HIV vaccine anyway? In some circles, the debate is if HIV could be the first epidemic to be eliminated without a vaccine.

I guess you have heard of all the interventions these days, the condom, the antiretroviral therapy for both treatment and prevention, the vaginal ring that showed promising results and scientists are busy in their laboratories cooking up new HIV prevention and therapeutic tools every day.

Dr. Kiweewa says despite these efforts we still need an HIV vaccine. "The numbers of new infections remain incredibly high," he says. For instance in Uganda 500 youth get infected with HIV every week.

Also, the high cost of treatment is unsustainable and ultimately a vaccine would be cheaper, reach many more people and let us not forget that ‘prevention is better than cure’.

Even if we get the HIV vaccine in the next two to three years, there is a possibility that it might not be suitable for us. And here is why an HIV vaccine might work elsewhere and not for Uganda or East Africans.

HIV has many sub-types, the East African region has two predominant subtypes A and D while southern Africa mostly has subtype C. The Uganda Virus Research Institute (UVRI) scientists did a research, sequencing the virus and found that 50% of the HIV virus in Uganda are recombinants of subtype A and D.

This means 50% of the estimated 1.3 million people who are infected with HIV in Uganda have a combination of subtype A and D or AD/DA. While it may not necessarily be more virulent scientists say it progresses faster.

“A vaccine has that challenge,” says Prof Pontiano Kaleebu, the director of MRC/UVRI/ London School of Tropical Medicine (LSHTM). It is for that reason and many others that the renowned professor thinks we are a forgotten lot. 

“They are forgetting us here where we have recombinants in east Africa,” said Kaleebu. in otherwards, the spread of recombinant forms of HIV could have implications for vaccines developed to guard against only certain sub-types and not others.

Not enough research is being done in the region, your governments are not investing enough money so that the scientists develop that vaccine that is suitable for you.  So keep the optimism but also be mindful of the future that we could walk away empty handed here where the HIV burden is highest.

ends.

WhatsApp groups with journalists and their sources should stop

By Esther Nakkazi

As we celebrate this years' World Press Freedom day, I say WhatsApp groups with journalists and their sources should stop.

In the current era, WhatsApp groups are formed pretty much after every engagement and for any cause to exchange information, debate issues, network or even fundraise.

Some are just timely, they run for a short while and for a worthy cause. I particularly like the baby shower WhatsApp groups. We discuss everything from the sex of the baby to its gifts. On the D-day, we ‘surprise’ the mother.

After the baby shower is over, happy moments in pictures are shared, the group is deleted and we move on. It is interesting that some people forget about the whole issue and probably check on mother and born baby a year later!

While the exchange of ideas and debating issues via WhatsApp is very good and has changed the way audiences consume news, giving feedback and wider visibility through more eyeballs, I am afraid that WhatsApps groups with journalists and especially the people supposed to give them information is outright wrong.

Ethically it has never been a good idea for journalists to cozy up to the people they cover. I thought journalists are supposed to keep some professional distance? But now the opportunist and savvy public relations officers have mastered their WhatsApp game. Don't also forget that journalists can be lazy.

They set up their own groups, send minute to minute updates - these can even be a voice WhatsApp and by the end of the day all radio stations will be singing their story with the same voice quote like a song.

If the groups only kept the conversations to news discussions maybe it would make sense but the reality is that they move beyond that and engage in ‘lugambo’ and getting daily compliments or updating each on a minute by minute basis, because that is what WhatsApp almost does to us!

The defenders of these groups were journalists are bedding with their sources say these keep the journalists and the people who give them information in constant touch in this era of fast news and they are so much alike press conferences but only in virtual space.

I have been on WhatsApp groups where posts deepen not only to family issues but also to uncomfortable topics where the public relations or communications person will blame the journalist for bad publicity - however truthful the story may be and even pressurise the journalists to apologise or retract because their ‘bosses are angry’ and job security has been threatened. 

I guess it is okay to send a personal WhatsApp to the source but manipulation of a whole group to cover what they want and the way they want it is demeaning good journalism.

Until we understand that the two groups have completely different roles, only then will journalists stop bedding with public relations or communication officers in the same WhatsApp group.

Malawi’s six-year maize export ban increased consumption but made farmers poorer

By Esther Nakkazi

Malawi’s six-year maize export ban increased consumption by 6 percent, achieving its objective of increased food security, measured narrowly in terms of availability of maize at lower prices, according to a study by Karl Pauw et al.

But these gains come at a cost to the rural farm sector, which suffered a 0.2 percent decline in agricultural value-added and lower disposable income levels, especially among poor farmers. Malawi imposed an uninterrupted maize export ban from 2011/12 until the end of 2017.

The ban was instituted through the government regulation of international trade of so-called “strategic crops” through its Control of Goods Act (2015). In there, commodities listed in the act, such as maize, require an export license. So export bans are enforced by withholding licenses, which in practice means formal exports through recognized border posts are affected.

Our results show that policy-induced distortions in the form of export bans or export levies on agricultural commodities create disincentives for farmers to produce, rendering these policies self-defeating and unsustainable in the long run. Moreover, export restrictions can be welfare-reducing and welfare losses tend to be biased against poorer farm households says the study.

It says when short-term political motivations outweigh longer-term socio-economic considerations, adverse effects may be conveniently overlooked by policymakers.

"Our results also highlight a more general concern about uncertain and incoherent agricultural policy environments that prevail in so many Sub-Saharan African countries, namely that they perpetuate a subsistence farming culture rather than encouraging commercial crop cultivation," says the study.

"This has negative consequences for the supply of marketed foods and intermediate inputs required by agro-processing sectors. Ultimately this is inconsistent with the stated economic transformation ambitions of so many African countries, articulated in the case of Malawi in its second Malawi Growth and Development Strategy (MGDS II) as shifting its economy from being a “predominantly importing and consuming economy to a predominantly producing and exporting economy”

In the past decade, more than 30 countries, including virtually all the world’s top grain producers and several southern and eastern African countries have imposed grain export restrictions.

Given the political and socioeconomic importance of maize in Malawi, the export ban has always been a highly sensitive topic, and any advocacy on the matter was done discreetly.

More about this study can be found at https://www.sciencedirect.com/science/article/pii/S0305750X18301025

Suddenly, why am I among the generation to not end malaria?

By Esther Nakkazi

The world over, on this day, April 25, 2018, it is World Malaria Day. Today is also the tenth World Malaria day ever after a decade when it started being celebrated and maybe the saddest ever because malaria is on the rise again.

With not much time to waste we should know that the gains we sang about and thumped our chests over about conquering malaria for the past decade have reversed. In 2016, malaria cases rose for the first time in a decade and there were 216 million cases of malaria, 5 million more than the previous year.

There were also 445,000 deaths in 2016 as well human migration is continually importing the disease from high burden areas to lower burden areas. In some high burden countries, the annual number of deaths from malaria has increased. Those with the greatest burden of disease and death are those caught up in a humanitarian crisis where conflict remains the greatest challenge like Burundi, Chad, DR Congo and South Sudan.

Sadly, this treatable disease, malaria, still kills a child every two minutes.

I have not suffered from malaria in about five years and I think it is because I try to prevent it. I often spray my inside and outside my house twice a year. I sleep under a mosquito treated bed net and when I stay out of Uganda for long, I take my medication days before I return.

But it is not only me who has achieved some feat, some countries have even bigger gains. Egypt and Morocco have been malaria-free since 2000, and Algeria since 2016. Others are following suit, Botswana, Cape Verde, Comoros, South Africa and Swaziland, will most likely eliminate malaria by 2020.

Algeria, Comoros, Madagascar, the Gambia, Senegal, and Zimbabwe have also been honored this year by the African Leaders Malaria Alliance for leadership in scaling down malaria cases. In total forty-four countries are reporting less than 10,000 cases.

But even with my own prevention success and for the countries mentioned, malaria is back and with a vengeance. Suddenly, the target of reducing malaria cases by at least 90% by 2030 looks bleak.

Dr. Tedros Adhanom Ghebreyesus, Director-General of the WHO says the malaria fight is at crossroads. But he is hopeful this generation could be it but wants urgency.
“We could be the generation to end the disease for good. If we don’t seize the moment now, our hard-won gains will be lost,” says Dr. Ghebreyesus and cautions, "if we continue along this path, we will lose the gains for which we have fought so hard."

Anti-malaria campaigners say we have become complacent in dealing with malaria. Funding has also flatlined. However, if ONE of the actions to revitalize the fight against malaria is funding then we have hope after the London Malaria Summit.

The UK Prime Minister Theresa May and other Commonwealth leaders made a commitment to halve malaria burden across 53 member countries by 2023 in response to the London Malaria Summit.

There was renewed leadership and energy in the fight to end malaria or “Ready to Beat Malaria” and resource commitments - worth over £2.9bn ($4bn) - to catalyse progress towards beating malaria at a time when efforts to end the preventable disease have stalled.

In addition, the Multilateral Initiative on Malaria (MIM) conference in Dakar brought together scientists and researchers from across Africa to share the latest innovations in the fight against the disease.

Specifically, over the next five years, the Wellcome Trust committed more than £100 million to understand the parasite genome, designing more effective vaccines, developing new treatments, insecticides, and diagnostic tests, and tackling the emergence of a "super strain" of resistant malaria in Southeast Asia before it spreads to Africa. 

Zenysis Technologies has a software platform to help governments identify potential malaria outbreaks ahead of time and they committed in-kind technical support worth $6 million to other malaria-endemic countries in Africa and elsewhere.

Also, five crop protection companies, BASF, Bayer, Mitsui Chemicals, Sumitomo Chemical Company & Syngenta, launched ZERO by 40, a joint initiative supported by IVCC and the Bill & Melinda Gates Foundation, to accelerate development of innovative vector control tools and extend their commitments to help eradicate malaria by 2040.

Australia announced an investment of AUS $56.25 million from their Health Security Initiative to support the development of new resistance beating malaria prevention, diagnosis, and treatment tools 2018-22. They also committed up to AUS $700,000 to support the July 2018 Malaria World Congress in Melbourne and finance new Health Security Fellowships for professionals working in the Greater Mekong Sub-Region.

The Kingdom of Eswatini pledged to get rid of malaria by 2020 and to double domestic financing for indoor residual spraying and also committed to mobilize more domestic resources from the private sector.

Ghana agreed to be one of three countries to pilot the new malaria vaccine, RTS, S, and one of the first to introduce next-generation resistance beating insecticides for indoor residual spraying. RTS, S, the first approved malaria vaccine, will be used in the field starting later this year. The Gate Foundation is working with GSK and other partners to find ways to make RTS, S more durable.

Guyana committed to a targeted response, technology transfer and the need to introduce new tools to accelerate their efforts to defeat malaria. Kenya said it would ensure at least 80% of people living in malaria risk areas are using appropriate malaria preventive interventions and that all malaria cases are treated in accordance with the National Malaria Treatment Guidelines. 

While Malawi committed to reduce malaria incidence and deaths by at least 50% by 2022 and to eliminate malaria entirely from the country by 2028.

With all this renewed commitment and my own success am hoping that this generation does end malaria. 

MTN has largely complied with license obligations but some areas lacking

By Esther Nakkazi

The Uganda Communications Commission or UCC has published an evaluation report showing MTN Uganda Ltd’s regulatory compliance since it gained a National Telecommunications Operators license in 1998.

However, the report covers only the past ten years of UCC monitoring the operations of MTN evaluation focused on three broad categories of obligations; the financial, legal and technical.

Whereas MTN has to a large extent complied with most of its license and regulatory obligations, there are a number of outstanding areas of non-compliance which must be addressed before UCC processes its application for renewal of a license, says Godfrey Mutabazi, the UCC executive director in the report.

The report says MTN has largely provided uninterrupted telecommunications services during the course of its license in accordance with the laws of the Republic of Uganda. MTN got its license on April 15, 1998, from the Government of Uganda acting through the Minister of Works, Transport and Communications and UCC granted it an NTO license.

But it is due to expire in October 2018 and in accordance with the provisions of its National Telecommunications Operators (NTO) license, has formally submitted its application for a single term renewal of the license for another ten years.

The report says the evaluation will enable UCC to consider the application for renewal of MTN’s license. The evaluation reveals that MTN has largely been compliant, providing uninterrupted telecommunications services to Ugandans for over 20 years as an NTO.

As at 31st December 2017, MTN Uganda recorded growth in its subscriber base with 239,047 fixed lines and 11,587,207 mobile subscriptions. The client base is serviced by a national radio network of more than 1,637 base stations and it is fibre network that spans 4500 kilometers and a national mobile agency network of 77,144 among others.

Its revenues have also grown to more than UG Shs 1.3 trillion and have been recognized as one of the top taxpayers as well it has participated in various corporate social responsibility drives.

The report says MTN has pretty much complied with its financial obligations, for instance, its payment of the Levy on the Gross Annual Revenue, the initial Bid fee and Initial fee and maintains accounting records with acceptable accounting principles in accordance with the license agreement.

But points out that it has failed to comply with payment of assessed spectrum fees with an outstanding balance of Ushs 27,979,938 and has also failed to pay authorized fees for two invoices amounting to $295 and $3,540.

Throughout the monitoring period, it was observed that MTN which is obliged to interconnect with other licensees, so that users of one operator can communicate and access services with users of another operator, has indeed interconnection agreements with a number of licences like UTL, Airtel, Sure telecom, Simbanet, Afrimax, Africel/Orange and Smile Communications .

However, MTN has failed to meet statutory timelines for interconnections with One solutions Ltd, MTN-Simbanet, Roke Telecom. MTN has submitted that for these ones the obligation is not exclusive to them but UCC says the dual responsibility does not absolve MTN of its interconnection duties with the interconnection seekers.

Furthermore, it is also faulted for charging Ush 3 higher domestic interconnection fees. UCC requires MTN to charge domestic interconnection fees of Shs 112, a fee set in 2012, but MTN unilaterally levies Ushs 115. To this MTN argues that UCC did not have the powers to set interconnection rates by 2012.

UCC also says MTN has failed to report material information about the integrity of billing platforms. Over 360,000 incidents of erroneous billing were reported between June and Oct 2014, by MTN data customers.

However, even if MTN is obliged to report these matters to the regulator, it did not until its integrity questioned. Adamantly, MTN says it was under no obligation to report such incidents to the Regulator and only admitted to ‘multiple bundle loading and system logic failure and reimbursed some affected customers. But UCC maintains that the delay in communication of billing system malfunctions to its client base and to the regulator was negligent of MTN. 

UCC also observed that MTN delays in resolving consumer complaints, citing the last 2 years when it failed to resolve consumer 90% of complaints in 24 hours as the agreed threshold. It only managed to resolve 76.5% of complaints within the stipulated timelines.

It also noted that MTN is non-compliant with regulatory directives and continues to send out unsolicited messages without ‘opt out’ information contrary to UCC directive requiring all operators to stop such messages.

MTN in response argues that it instructed its content provider to ensure that all messages have ‘opt out’ messages. But UCC says MTN only applied this directive to 3rd party content providers and not MTN’s own unsolicited messages.

UCC is still receiving input from the public about the performance of MTN Uganda ahead of its license renewal. A public hearing was held on 26th March 2018 and UCC heard from MTN’s clients.

Ultimately, the regulator says if the decision is made to renew the license, the terms and conditions under which MTN Uganda’s new license will be granted will be different.

One in four blood transfusions transmit malaria in some parts of Africa

By Esther Nakkazi

At least one in four blood bank supplies in some areas of sub-Saharan Africa contain malaria parasites putting a high risk of transfusion-transmitted malaria especially to children with anemia.

Researchers suggest that for malaria to be eliminated, all sources of disease transmission, including the region’s blood banks, need to be addressed.

“Our findings clearly reinforce World Health Organization or WHO recommendations that all transfusion recipients receive preventive malarial treatments,” said Dr. Claudia Daubenberger based at the Swiss Tropical and Public Health Institute.

According to the WHO, 90 percent of all malaria cases are located in sub-Saharan Africa. Transfusion-transmitted malaria (TTM) in this region is estimated at 28%.

The findings were from two research studies presented at the 7th Multilateral Initiative on Malaria (MIM) Pan African Malaria Conference in Dakar, Senegal on 16 April 2018.

The first study, a systematic review, and meta-analysis gathered results from 24 studies including more than 10 studies from Nigeria, Africa’s most populous country to assess malaria prevalence among 22,508 blood donors.

Also, articles from databases and clinical trial registries reporting prevalence studies of malaria parasitemia amongst blood donors in sub-Saharan Africa published between 2000 and 2017 were used.

As well grey literature sources such as the WHO website and published reports of ministries of health websites of countries and reference lists of papers were also screened. Risk of Bias was assessed using the Joanna Briggs Institute Prevalence Critical Appraisal Tool.

The pooled prevalence of malaria parasitemia found was 23.46 percent. The study showed that without better vigilance, children receiving transfusions to address malaria’s impacts like anemia risk exposure to more malaria-causing parasites.

“Our research is only the first line of inquiry needed to address this risk. Pregnant women and children receive the majority of transfusions in this region,” said Dr. Selali Fiamanya and colleagues from the Worldwide Antimalarial Resistance Network (WWARN).

The technical challenges of diagnosing and removing the Plasmodium parasites from the blood banks require further analysis, but we know already that these findings threaten the next generation—our future, said Dr. Fiamanya.

The second study, focusing on the blood supply of Equatorial Guinea’s capital, Malabo, found much higher levels of latent malaria infection, most of it—more than 89 percent—at a level that commonly used diagnostic technology cannot detect.

Typically, rapid diagnostic tests (RDTs) and thick blood smear microscopy are used to diagnose malaria, but these cannot detect latent malaria infection so low-level or asymptomatic infections can hide reservoirs of parasites that fuel future malaria outbreaks.

The study used a more sensitive diagnostic test—quantitative polymerase chain reaction (qPCR) assays, which are currently too expensive and unsuitable for most field conditions—to examine.

29.5 percent of the 200 blood samples collected in Malabo were contaminated according to the study conducted by Dr. Daubenberger and colleagues at the Swiss Tropical and Public Health Institute, and Dr. Tamy Robaina at the Malabo Blood Bank.

All of the samples thought to be free of the malaria parasite held very low concentrations of the parasites—under 100 parasites per microliter of blood said Dr. Daubenberger.

“With better screening technology and practices in place, blood banks in sub-Saharan Africa can be well placed to serve as a surveillance system, helping to monitor malaria and other transfusion-transmitted infectious diseases,” said Dr. Daubenberger.

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