Experts comment in a supplement to December’s American Journal of Preventative Medicine, that the public health should not only focus on decreasing the burden of common diseases, it should also address the needs of people with blood disorders.
According to the authors’ introductory essay, even blood disorders that are relatively common are overlooked, with no established mechanism for surveillance in existence.
The authors Scott D. Grosse, PhD, of the US Centers for Disease Control and Prevention (CDC), Andra H. James, MD, of Duke University and Michele A. Lloyd-Puryear, MD, PhD, of the US National Institutes of Health with Hani K. Atrash, MD, MPH, argue that even though most blood disorders discussed in the supplement are considered rare, i.e. defined as affecting approximately 1 in 1,500 people in Western Europe and in the U.S., they should nevertheless be classed as a public health concern. They say:
“A public health framework is needed to address public health services and functions for all rare disorders, including blood disorders, regardless of the incidence or prevalence of a given disorder.”
The most common blood disorder in the U.S., affecting at least 1 million individuals is venous thrombo-embolism (VTE), a combination of deep vein thrombosis and pulmonary embolism, whereby blood clots that occur in veins, generally in the legs, can break loose moving to the lungs and subsequently can kill a person. The authors’ comment, “little is definitively known about the magnitude of [its] public health burden.”
They address hereditary hemochromatosis, a genetic disorder in about 1 million Americans adding that, “the opportunity to detect iron overload at an early stage and intervene … to prevent the development of clinical disease … remains a challenge.” They continue saying that whilst at least 3 million Americans suffer from sickle cell disease or are carriers of the sickle cell gene mutation, “the extent to which the carrier status poses health threats is not well established.”
The American Journal of Preventative Medicine supplement consists of 13 research papers, and five workshop/meeting summaries, with two papers focusing on sickle cell trait screening policy in college athletes and military recruits, whilst seven papers address hemophilia and bleeding disorders, such as the most common being hemophilia A and B, and the hemoglobinopathies-sickle cell disease and thalassemia.
All authors are top medical educators and public health professionals. The CDC supported the supplement’s publication through a cooperative agreement with the Association for Prevention Teaching and Research.
To address these conditions that are often overlooked, Grosse and his team propose a public health framework similar to the 10 essential public health services, but based on rare disorders instead on common exposures or health problems.
The proposed framework calls for public health officials to:
- Evaluate the prevalence/incidence of specific rare disorders;
- Conduct research to identify preventable causes of health problems among people with rare disorders, including barriers to the consistent use of effective prophylaxis and treatment;
- Quantify the impacts of rare disorders on disability, mortality and use of the healthcare system, especially hospital-based care;
- Educate and empower individuals with rare disorders and their family members and primary care providers;
- Monitor health status and health-related quality of life of those affected by rare disorders as well as their families;
- Assess the effectiveness, accessibility, and health services quality for people with rare disorders;
- Ensure access to cost-effective and affordable screening, diagnostic, primary care, and specialty health services;
- Inform program and policy decision makers about cost-effective strategies to improve health outcomes for people with rare outcomes.
- Where appropriate, establish early and continuous screening systems;
In a concluding statement the authors say:
“Blood disorders have a vital importance to public health and vice versa. Whether relatively common or relatively rare, people with blood disorders have health challenges specific to their conditions that require knowledgeable healthcare providers, access to screening and diagnostic testing, and information to help them manage their conditions.”
Written by Petra Rattue