1 in a million: The cost of rare disease treatment in Tanzania

Rare diseases affect a relatively small number of people, often less than one in 1000. These diseases can be extremely expensive to diagnose and treat, especially in developing countries like Tanzania. In this article, we will explore the challenges faced by Tanzanians affected by rare diseases and the cost of rare disease treatment.

1 in a million: The cost of rare disease treatment in Tanzania

Understanding Rare Diseases

A rare disease is defined as any condition affecting fewer than one in 2000 individuals. According to World Health Organization (WHO), there are over 7000 known types of rare diseases. Many of these conditions have no cure or specific treatments, making them particularly challenging for patients and health care providers.

In Tanzania, it’s estimated that around five percent of the population has a rare disease. However, due to limited access to appropriate diagnostic tools and clinical expertise, many cases remain undiagnosed.

Challenges Faced by Patients with Rare Diseases in Tanzania

Tanzania, like many other countries, faces several challenges when it comes to addressing the needs of patients with rare diseases. In this article, we will discuss the primary hurdles that patients with rare diseases in Tanzania often encounter. By understanding these issues, we can work together to develop strategies to improve the quality of life for these individuals.

Limited Information and Awareness

A major challenge faced by patients with rare diseases in Tanzania is the lack of information about these conditions among healthcare professionals and patients themselves. This limited awareness often leads to:

  • Misdiagnosis or delayed diagnosis
  • Inadequate treatment options
  • Limited support for patients and their families

At Tanzania Price, we aim to provide comprehensive and up-to-date information on various topics, including health and wellness, to help bridge this information gap.

Delayed Diagnosis and Treatment

Due to the lack of knowledge about rare diseases among healthcare workers and the limited diagnostic facilities offered at some public hospitals, patients often experience late diagnosis. This delay can lead to:

  • Worsened health outcomes
  • Reduced quality of life
  • Increased healthcare costs

Efforts to improve the availability and accessibility of diagnostic facilities are crucial to address this issue.

High Cost of Diagnosis and Treatment

Patients with rare diseases in Tanzania often face financial challenges in accessing proper diagnosis and treatment. Factors contributing to these high costs include:

  • Limited availability of local medical practitioners who can diagnose or treat rare diseases
  • The need to travel abroad for diagnosis and treatment
  • Out-of-pocket expenses for specialized care

To help alleviate these financial burdens, it’s essential to explore ways to increase access to affordable healthcare services for patients with rare diseases.

Addressing the Challenges: What Can Be Done?

To improve the lives of patients with rare diseases in Tanzania, several steps can be taken:

  1. Raise awareness: Increase public awareness of rare diseases through educational campaigns and informational resources.
  2. Improve diagnostic facilities: Invest in the development of diagnostic centers and the training of healthcare professionals to better identify and manage rare diseases.
  3. Encourage research: Support research into the causes, diagnosis, and treatment of rare diseases.
  4. Promote collaboration: Foster partnerships between local and international organizations to share resources and knowledge.
  5. Advocate for policy changes: Work with the government to develop policies that improve access to care and financial support for patients with rare diseases.

Patients with rare diseases in Tanzania face numerous challenges, including limited information, delayed diagnosis, and high treatment costs. By addressing these issues and working towards better healthcare infrastructure, we can make a significant difference in the lives of these individuals. At Tanzania Price, we are committed to providing valuable information and resources to help improve the well-being of all Tanzanians.

Cost Of Rare Disease Treatment In Tanzania

The costs incurred when treating a patient with an uncommon ailment depend on various factors such as identification through diagnostics tests ,expertise availability within country limits amongst other reasons . Here are some examples ;

Pompe Disease – A case study

Pompe disease is an inherited metabolic disorder characterized by progressive muscle weakness leading to respiratory failure which, if not treated can lead to death. A baby diagnosed with Pompe disease in Tanzania will require treatment costing about 250 million Tanzanian shillings (approximately US$100,000) every year for the rest of their lives.

Hemophilia – Another case study

Hemophilia is a rare genetic disorder that affects blood clotting. Treatment requires regular injections of clotting factor concentrates that cost around TSH 50,000 (US$20) per unit. For severe cases of hemophilia, patients may require dozens of units each month, making the total cost unaffordable for many Tanzanians.

Possible Solutions

The high cost of treating people with rare diseases in Tanzania makes access to healthcare an obstacle for those who need it most desperately.Protocol awareness and better diagnostic facilities for such ailments including increased public-private partnerships aimed at reducing the monetary burden on affected families could make a difference.

Additionally , there should be ongoing programs aimed at educating health care personnel and general public more about various rare diseases; hence reducing delayed diagnosis as well as referal abroad for medical facilities otherwise available locally .


Rare Diseases pose immense challenges to both individuals living with them and their caregivers especially when accessibility to treatment becomes an obstacle due to high costs involved.As discussed above these conditions are often so expensive that only a small number have access to effective treatments or specialized clinics . This puts tremendous strain on patients’ physical and mental well-being as they navigate this difficult terrain. It’s essential that governments across Africa partner together in order find solutions towards providing accessible care regardless o f one’s socio-economic status among other factors .


1) What is considered a rare disease?
A rare disease is defined as a condition that affects fewer than 5 in 10,000 people.

2) Why are treatments for rare diseases so expensive?
The cost of developing drugs to treat rare diseases can be very high due to the smaller patient populations and the need for specialized testing and research. In addition, because these treatments are often life-saving or life-altering, pharmaceutical companies may charge higher prices to recoup their development costs.

3) How does Tanzania address the cost of treating rare diseases?
Currently, there is no specific policy or program in place to address the cost burden of treating rare diseases in Tanzania. However, efforts are being made by international organizations and local NGOs to improve access to affordable treatment options for patients with these conditions.


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