Kumar Magarati heads to Nepal Thalassemia center every 4 weeks. His two-year-old daughter Anamika is a Thalassemia patient and needs a regular blood transfusion. Failure of not receiving a timely transfusion could be fatal - leading to weakened bones, enlarged spleen, pulmonary hypertension along with heart, lungs and cardiac complications.

Parents like Magarati rely heavily on regular blood donors for a continuous supply of “life” for their children. Unfortunately, the recent Covid19 crisis is making this very challenging.

“The pandemic has made it even more challenging for us to find and manage blood donors, the whole country is under lockdown,” says, Durga Pathak, founder of Nepal Thalassemia Society (NTS).

As a response to this crisis, Pathak and his team at NTS have been forced to take drastic measures.

“In this difficult time, we received directions from International Thalassemia Federation, depending on the level of hemoglobin, we have now lengthened the transfusion interval for the patient. A patient who was scheduled to receive blood transfusion every 2 weeks is now rescheduled for 3 weeks and so. This was a necessary measure needed to tackle the scarcity of blood and mitigate the risk of Covid19,” said Pathak.

On an average 170 thalassemia patients visit NTS for the purpose of blood transfusion — a temporary means to cure the condition.

While there are other permanent ways to treat the condition, bone marrow transplant being one of them is not only quite expensive, it is only possible for a small minority of patients who have a suitable bone marrow donor. Another approach is the newly approved gene therapy which is only possible for patients who are over 12 years of age and is quite expensive as well. 1

What is thalassemia?

Thalassemia is an inherited blood disorder, it is carried in the genes and passed on from parents to offspring similar to passing on characteristics like shape, color or size. The condition causes the body to produce fewer hemoglobins than normal. Hemoglobin is the protein in the red blood cells that carries oxygen to our body's organs while transporting carbon dioxide back from the organs to our lungs.

Symptoms

People with thalassemia may have mild or severe anemia. Severe anemia can damage organs and even lead to death 2. Symptoms will not show until the age of 6 months in most infants with some types of thalassemia, because newborns have a different type of hemoglobin, called fetal hemoglobin 3. On the other hand, visual symptoms of the condition which is not communicable by direct or indirect contact, might not be seen in people with less severe forms of thalassemia so the patients might not know if they're carriers. If both parents are carriers, they can pass the disease to their kids 4.

Symptoms Include

  1. Jaundice and pale skin

  2. Drowsiness and fatigue

  3. Chest pain

  4. Cold hands and feet

  5. Shortness of breath

  6. Leg cramps

  7. Rapid heart beat

  8. Poor feeding

  9. Delayed growth

  10. Headaches

  11. Dizziness and faintness

  12. Greater susceptibility to infections 5

Types

The type of thalassemia depends on which mutated genes were inherited from the parents and the numbers of genes inherited. There are two main types of thalassemia:

Alpha thalassemia

It occurs when a gene or genes related to the alpha globin protein are missing or changed (mutated).

Beta thalassemia

It occurs when similar gene defects affect production of the beta globin protein 6.

There are two further forms of thalassemia, with each type having many subtypes. Both alpha and beta thalassemia include major and minor forms.

Blood has no substitutes, it cannot be made or manufactured. Blood is required to treat patients going through different cases like surgery, accidents, pregnancy, cancers, various diseases and many other medical conditions. For those fighting for life and death in need of blood, volunteer human donors are their only source. At this time, as a result of the coronavirus outbreak, many blood donation events have been either postponed or cancelled. The lockdown, while essential for halting the spread of covid-19, has deterred blood donation activities. In response to the need of blood, Nepal Red Cross Society has initiated a door to door blood collection initiation with the support of a number of organizations. From recent news and feedback from blood banks, this particular initiative has dramatically helped keep a decent supply of blood for now.

But the fear and concerns from regular donors on their safety during their donation processes could deter otherwise enthusiastic donors. We appeal to organizers and blood bank staff to keep safety protocol front and center for their own protection as well as the donors.

  • Are we maintaining the physical distancing protocol seriously?
  • Are we keeping the number of people at any given time at an event to a minimum? If grocery stores are only letting four people at a time. Are we keeping this in mind for our donors?
  • Are we using proper PPE?
  • Are we sanitizing our hands and donor exposed areas after every donor?
  • Are we screening donors for covid-19? Are we asking them the right questions?
  • Are we giving stress balls for the donors to use while they donate? If yes, are they disinfected?
  • If we are giving them food during mobile camps, how are we making sure food is kept safe?

We need to be cautious about safety protocol for any and every blood donation during this time.

Importance of digitization and information in such a crisis

It’s more important now than ever to have proper organized data to help us work efficiently and with less risk in times like these. Proper stock inventory management to understand the changing demand can educate blood banks if donor recruitment efforts should be scaled down or up. This in turn will help organizers and blood banks take calculated risks in mobilizing their team for donor awareness and donation event planning. Also, a proper harmonized donor database will make recruitment efforts smoother and easier.

Unless we work towards a steady supply of blood and are able to harness the opportunity of data to our benefit, patients like Anamika will continue to bear the brunt of the crisis.

  • 1 

    Labiotech.eu - First Gene Therapy for Beta Thalassemia Approved in Europe

  • 2 

    Centers for Disease Control and Prevention - What is Thalassemia

  • 3 

    Medical News Today - Everything you need to know about thalassemia

  • 4 

    KidsHealth - For Parents - Alpha Thalassemia

  • 5 

    Medical News Today - Everything you need to know about thalassemia

  • 6 

    Medical Encyclopedia - Thalassemia