Nepal enjoyed a similar status when the World Health Organization (WHO) called it as the Southeast Asia’s first nation to fight Trachoma fully.

On May 24, 2018, WHO lauded Nepal for its efforts in topping the region in eradicating the world’s leading infectious cause of blindness, Trachoma. The international body hailed the country for its strong government and public-level support in achieving the milestone, which many countries are still fighting for.

Appreciating the country, WHO also awarded an Acknowledgment Letter of Validation to Nepal’s Minister of State for Health and Population Padma Kumari Aryal as part of the World Health Assembly 2018.

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The 28^th World Hemophilia Day (WHD) pitched on the need for increased awareness on hemophilia and other inherited bleeding disorders, globally.

Background and Cause

The world started observing WHD from April 17, 1989 and the day was marked in recognition of the birthday of Frank Schnabel, Founder of World Federation of Hemophilia (WFH).

Since its inception, WHD has been marked globally with a strong motive of spreading awareness and necessary assistance to those suffering from hemophilia.

Besides spreading a word, WHD has also been attracting volunteers for WFH and raising funds for those striving to afford for hemophilia treatment, over the years.

Case of Nepal

Like other countries globally, Nepal has also been contributing its part to the global efforts against hemophilia, and Nepal Hemophilia Society (NHS) is one name that needs no introduction when it comes to fight against hemophilia in Nepal.

Affiliated to WFH and the National Federation of Disabled Nepal (NFDN), NHS is run by a group of volunteers including either the hemophilia-affected people or the parents of the affected.

NHA aims to a provide a full-fledged support to the Persons with Hemophilia (PWH) grouping them into a community enabling self-help and mutual support among themselves, and also offers all the needed medical, educational and psychosocial support to the target groups.

With the support of Disabled Peoples’ Organizations (DPOs), NHS has been advocating and spreading awareness on treating hemophilia across the country.

As part of its efforts, NHS holds a general assembly every year to discuss its policies and plans to support the needy. The Society has been striving for the cause in close coordination with the local blood banks and hospitals across the country.

NHS also has two established care centers at Bir Hospital and Kathmandu Medical College (KMC Hospital) to treat and offer needed counselling on hemophilia and related disorders.

“Haemophilia is a x-linked inherited bleeding disorder caused by the deficiency of factor VIII or factor IX in the blood. Most children with hemophilia have muscle or joint swelling due to internal bleeding. The treatment of hemophilia is expensive and the facilities are mostly localized in the Kathmandu Valley,” says Dr Kiran Manandhar, NHS Chairman, adding that the average cost of treatment is usually 1 lakh per year.

Shova Bhattarai, a member of the society, recommends the need for physiotherapy for such patients.

Out of the estimated 3000 hemophilia patients across the country, NHS has registered 506 PWH as of December 2014, with most of them being males.

Meanwhile, another locally-renowned NGO found the incidence of hemophilia in Nepal at 1:10000 among the overall male births and all races, religions and socio-economical groups.

Though the disease is incurable, the affected can lead a normal life upon early diagnosis and necessary treatment.

According to WFH Annual Global Survey 2016, the world has 295,000 people with bleeding disorders in 113 countries and the latest figures show approximately 400,000 hemophiliacs, globally.

Hemophilia Hero, A Special Case

Chris Bombardier is one name that has to be recalled when it comes to fight against hemophilia.

Belonging to Denver of Colorado, Chris was diagnosed with hemophilia B at birth. Basically, an athlete and an avid baseball player, Chris rose to fame as the mountain climber and is renowned as the first person with severe hemophilia to climb five of the world’s seven summits.

It was in 2011 that he climbed the first of the Seven Summits, the highest peaks on each of the seven continents. Beginning with the Mount Kilimanjaro in Africa, Chris went on to climb world’s famous peaks such as Aconcagua in Argentina, Elbrus in Russia, Denali in Alaska and Carstenz Pyramid in Papua New Guinea, and finally made it to the world’s highest peak Mount Everest.

Chris is definitely an inspiration for many suffering from hemophilia!

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While NDHS usually provides survey reports on various health issues, the 2016 NDHS- the fifth edition has come up with its findings on hypertension for the first time in its history.

Major Progress in Maternal and Child Health

The 2016 survey highlighted major progress in maternal and child health situation in Nepal over the last 20 years.

The findings have shown a decline in the percentage of stunted children by 14% during 2001-06, by an additional 16% during 2006-11 and a drop by 12% during 2011-16, with a similar trend downwards in case of underweight children.

According to the survey, the nutritional status of children in Nepal has improved over the two decades.

                  (Source: 2016 NDHS Report)

            (Source: 2016 NDHS Report)

Decline in Line with Millennium Development Goals

“This decline has been in line with the Millennium Development Goal (MDG) target. However, there is still a long way to go to meet the SDG target of reducing stunting to 31% and underweight to 25 percent among children under 5 by 2017 (NPC 2015),” said the report.

                      (Source: 2016 NDHS Report)

With regard to infant mortality, there has been a decline from 78 per 1,000 live births to 32 during 1996-2016.

Pointing at a sharp decline in under-five mortality from 118 deaths per 1,000 live births in 1996 to 39 deaths per 1,000 live births in 2016, the survey found that more children in the country are surviving early childhood than ever before.

Fertility levels and preferences, marriage, sexual activity, nutrition, breast feeding practices, anemia, childhood and maternal mortality, maternal and child health, HIV/AIDS and other sexually transmitted infections and domestic violence are among other health issues covered under the survey.

Data Relevant to National Health Strategy

             (Source: 2016 NDHS Report)

The 2016 NDHS also provides indicators relevant to the Nepal Health Sector Strategy (NHSS) 2016-2021 and the Sustainable Development Goals (SDGs), informed an official release.

The data collection for the survey was carried out from June 19, 2016 to January 31, 2017.

The 2016 NDHS was implemented by New Era under the aegis of the Ministry of Health, Nepal and was funded by the United States Agency for International Development (USAID).

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The World Health Organization (WHO) confirmed this in its publication on blindness and visual impairment released in October 2017.

“Among the first countries to make use of the new Tool for Assessment of Diabetes and Diabetic Retinopathy (TADDS) was Nepal, where the Nepali Ministry of Health had been concerned by the increase in diabetes and diabetic retinopathy and wanted to use TADDS to make sure it was taking the appropriate actions in response,” said WHO in its latest update on blindness and visual impairment.

WHO introduced TADDS in 2015 as a measure to address concerns related to timely diagnosis and treatment access for diabetic retinopathy, globally.

Lauding WHO’s support through this tool, Sailesh Kumar Mishra, National Programme Coordinator of the Apex Body for Eye Health under the Ministry of Health, Nepal said, “At the time Nepal had taken a step forward by listing non-communicable diseases as a priority health concern, but it was lacking the specific health policies, plans and programs to address diabetes and diabetic retinopathy in particular. TADDS has helped move us in the right direction.”

The WHO Country Office gave a direct assistance to the Nepali Ministry of Health in this assessment, informed the WHO release.

“The Office supported the field work, monitored the progresses and provided effective and timely feedback to the WHO Headquarters in Geneva,” said WHO.

How TADDS Helped Nepal?

The assessment made through TADDS reported insufficient collaboration between the eye care and diabetes management sectors, which made it difficult for the country’s health care providers plan and progress in their related tasks.

With the WHO tool, Nepal could assess current situation in the country, range of coordination across the services, extent of data sharing and the overall awareness the country’s diabetic patients have on the disease control.

A lack of needed awareness among the diabetic patients of the country, on the ways to manage diabetes and diabetic retinopathy, was also observed.

To address the concerns, the tool helped Nepal understand the need for updating its disease management guidelines to reflect best practices.

TADDS Assessment Led to Policy-level Decisions

Following the assessment, WHO and the Government of Nepal held a national policy discussion, wherein, the Nepali Health Ministry and its partners such as patient associations, agreed upon few immediate measures to address gaps in the system.

“Since then, the Government of Nepal has been making good progress. A National Strategy for the Integration of Diabetic Retinopathy Eye Care Services into the Public Health System and several clinical guidelines for managing diabetic retinopathy have been developed in part based on WHO guidance and are about to be approved.”

Finally, the Government of Nepal included diabetic retinopathy in the National Eye Health Policy, which is also nearing completion.

“We now know best where to place our energies, so that people with diabetes get the eye care they need to prevent any unnecessary loss of vision. And we have been able to do this because we made sure we had the buy in of all the stakeholders involved,” says Mishra.

Chronic Diseases on Rise

According to WHO data, there are around 422 million adults with diabetes, globally, and loss of vision is one of the major complications caused through diabetes.

Stating that diabetic retinopathy accounts to 2.6% of the causes of blindness in the world, WHO highlights that as one of the challenging diseases for many countries.

To address this major issue, WHO came up with TADDS to help the countries in dealing with diabetic retinopathy.

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