The Language of Clinical and Drug Research is $$$$$$

National funding, research, new clinical trials and new drug approvals are “widely disparate” between diseases that primarily affect minorities; African Americans, LGBTQ, Africans etc. The lack of basic clinical research coupled with the minimal possibility of maximum return on investments halts drug development and clinical trials on these diseases before they even get started.

  1. Ebola Virus: Ebola first appeared more than three decades ago in Africa. The reason given by ‘experts’ for why it took over three decades to get a vaccine or specific treatment for the disease, was “in part because the dangerous nature of the virus makes it difficult to study”. In reality however, for years, some scientists who studied Ebola, had worked hard to develop vaccines and drugs to combat these deadly disease, but their promising work was smashed up against unscalable walls of drug development. With outbreaks only in Africa, there was no potential for drug makers to recoup development costs.
  2. Sickle Cell Anemia: Minority Coalition for Precision Medicine founder Michael Friend compared sickle cell disease to cystic fibrosis: Despite being discovered 28 years after sickle cell, cystic fibrosis already has treatments for its symptoms and underlying cause. Cystic fibrosis, like sickle cell disease, is an inherited condition, but primarily affects white newborns. No therapies have been approved to treat the cause of sickle cell, which primarily affects black newborns.
  3. AIDS: In the beginning, AIDS affected mostly gay white men, but now, it’s disproportionately affecting communities of color. Fifty one percent of new cases are among blacks and Hispanics. HIV was first discovered in 1984, experts say there has been a very slow progress towards a workable vaccine because it’s different from other types of viruses and it does not fit typical vaccine approaches. In reality, funding creates a major roadblock for HIV vaccine research. HIV research funds are typically allocated for two- to five-year-long projects, scientists may only generate small-scale studies in that timeframe that prove their hypothesis deserves more investigation. Projects typically end if they don’t secure enough money for the next round of research.
  4. Malaria: There are over 500 million cases of Malaria annually among the world’s poorest populations. Malaria claims the lives of nearly one million children each year in Africa alone. The cost and difficulty in administering treatments that can prevent malaria, have for many years been considered insurmountable. After decades of neglect, funding from the international community to fight Malaria increased and the first Malaria vaccine rolled out in Africa in 2019.
  5. Huntington’s Disease: Egypt, the most populous country in the Arab world, has the highest prevalence of Huntington’s disease. Yet this nation of 100 million is overlooked when it comes to research on the fatal genetic disorder. The rate of prevalence in Egypt is double that of Europe, and 11 times higher than the U.S. average. Even so, not a single one of the 130 studies conducted by 67 sponsors in 30 countries over the past decade has included patients in Egypt.
  6. Neglected Diseases (NDs): According to The World Health Organization (WHO), NDs are hidden diseases as they affect almost exclusively extremely poor populations living in remote areas beyond the reach of health services. Neglected Diseases are given low priority because they have low mortality, they occur almost exclusively in poor developing countries and essentially, because they offer negligible marketable and profitable issues. NDs continue to cause severe and permanent disabilities and deformities affecting more than a billion people in the world and breeding millions of disability yet they are considered as “other”.
  7. Clinical Trial Exclusion: The Covid-19 pandemic and the disproportionate devastation it has wrought on Black, Hispanic, and poor Americans has (again) raised the call for creating inclusive clinical trials that are representative of all patient populations. Clinical trial recruitment criteria are often modelled for older white men. As such, those clinical trials are typically homogeneous. The result is marketed drugs that may not accurately treat the disease population, with the risk of minorities experiencing unexpected and possibly dangerous outcomes from these drugs; and they may also be leaving patients with unmet needs behind.

Clearly the small size of the market is a major barrier to the creation of new treatments for the diseases endemic in minority communities. It is time for Governments to create commercial incentives for drug makers to invest in the development of new drugs for many of these diseases.

What is your perspective? Comment below and let’s get the conversation going.

It’s a RAP (Respect science, Address systemic racism, Promote awareness of ethnic and racial health disparities)