Lack of Access to Care
TIF’s “Global Thalassaemia Review 2021,” a landmark report created in cooperation with the World Health Organization (WHO), demonstrates that less than 20% of patients with thalassemia worldwide receive adequate blood transfusions, and an even smaller percentage of patients receive appropriate iron chelation treatment.1 The absence of these cornerstones for effective thalassemia management leads to high morbidity rates and premature deaths, mainly in low- and middle-income countries (LMICs).
Τhe COVID-19 pandemic has sparked or exacerbated fears, concerns, and challenges in thalassemia care worldwide, which are intensified and prolonged in LMICs.
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To gauge the impact of the pandemic on patients with hemoglobin disorders, TIF surveyed 10,000 patients in 2020.2 A majority of patients (64.8%) reported having limited or no access to transfusion therapy, and 62.8% received inappropriately or sub-optimally processed blood.
Indeed, the maintenance of adequate blood supply in most countries has been hindered by issues pertaining to movement and travel restrictions, safe access to blood collection centers for donors, donors’ fear of donating, SARS-CoV-2 infections in donors, and national conditions in relation to blood transfusion services (decentralized facilities with limited capacity and resources).
The patient survey also identified gaps in the provision of appropriate iron monitoring and chelation treatment, as well as multidisciplinary care, an essential pillar of thalassemia management. Specifically, 8.4% of patients said they had access or uninterrupted access to appropriate iron chelation treatment, 4.8% had regular iron load monitoring, and 2.6% received multidisciplinary care.
In addition, the financial impact of the pandemic on patients and their families has been quite pronounced in a number of countries across the world. Many patients reported resorting to out-of-pocket expenses to receive even basic health care services or losing their jobs or income due to the pandemic and, consequently, facing multiple psychological and social repercussions.
Improving Care and Education
TIF has worked with its international group of medical and scientific experts to draw attention to the lack of access to care, coordinate efforts to improve access, and keep its global patient and health care provider communities informed.
TIF has made recommendations to national policymakers to accelerate the transition of health systems to universal health coverage and address existing health inequalities. TIF also recommended that policymakers reaffirm their commitment to provide continuity of care and priority access to COVID-19 vaccines to all people with chronic and complex diseases, including patients with hemoglobin disorders.
TIF also developed a broad series of educational resources on the disproportionate impact of COVID-19 on people with thalassemia, including position statements, scientific articles, and publications.
The latter consisted of informational guides on several topics of interest, including blood safety and adequacy, a TIF-proposed patient care pathway incorporating necessary changes in admission of patients to hemoglobinopathy units and clinics, a risk classification of patients with suggested best practices for their management, and a regularly updated guide on developing vaccines and therapeutics drugs for COVID-19.1
A primary focus of TIF has also been to enhance connections and advance communication with patient communities. TIF has done this through webinars focusing on COVID-19 vaccination in patients with hemoglobinopathies, the creation of a help desk and communication line for issues related to the pandemic, and the further mobilization of its patient advocacy group at the national, regional, and international level.
In its response to the protracted public health event of the COVID-19 pandemic, TIF has built on the guidance of the US Centers for Disease Control and Prevention, the European Centre for Disease Prevention and Control, the American Society of Hematology, the European Hematology Association, and the WHO, whose contribution has also been essential in the areas of patient safety, blood safety and adequacy, and availability of safe medicines.
Mutual support and knowledge sharing by people with a common diagnosis is a hugely important aspect of disease-specific advocacy, especially in turbulent times.
TIF has worked to do this through involvement with many relevant stakeholders and programs, such as The Advocacy Exchange,4 a virtual platform designed to promote the exchange of information among advocacy organizations and industry leaders. Such programs facilitate the much-needed conversations and interactions regarding patient access, disease awareness, and more.
TIF calls on patient associations and individual advocates to intensify actions at a local level in promoting issues that have arisen during the pandemic so they can create meaningful change in their respective areas. As always, TIF remains fully committed to supporting them in their educational and advocacy efforts.
Disclosure: Dr Eleftheriou is the executive director of TIF.
References
- Eleftheriou A, Angastiniotis M. Global thalassaemia review 2021. Thalasseaemia International Federation. Published 2021. Accessed December 9, 2021. https://thalassaemia.org.cy/what-we-do/global-thalassaemia-review/
- Englezos P. Declaration for access to health at the time of COVID-19 pandemic. Thalasseaemia International Federation. Published 2020. Accessed December 9, 2021. https://thalassaemia.org.cy/wp-content/uploads/2020/11/TIF-Declaration-COVID-19.pdf
- Modell B, Darlison M. Global epidemiology of haemoglobin disorders and derived service indicators. Bull World Health Organ. 2008;86(6):480-487. https://doi.org/10.2471/blt.06.036673
- The Advocacy Exchange. Updated 2021. Accessed December 9, 2021. https://www.theadvocacyexchange.com/
