Equity of Care in Underrepresented Populations in the Americas
Two session presenters from the 2022 PAS Congress share about the importance of their topic, equity in the Americas.
Dr. Mayela Rodríguez Violante:
While equality involves that every person is equal to the rest of the people, equity considers justice and impartiality so that every person can have the same opportunities. Although “health” is often considered a service, we all should reconceptualize it as a Human Right, since it is indeed.
In Latin America, the historical, political, and economic context affects and limits equitable access to quality health care in multiple ways. These inequities include access to specialists’ healthcare, research, genetic testing, treatment options, drug availability, and even training and education opportunities among physicians.
Respecting specialists’ healthcare and training, the WHO recommendation for the number of neurologists per 100,000 inhabitants is 1 to 5. This rate can be as high as 6.6 in Europe and as low as 0.04 in Africa. When considering the median of 0.43, it is evident that rates in low- (LIC) and lower-middle-income countries (LMIC) are masked. In America, the median of neurologists is 0.7 (range from 8.33 in Argentina to 0.22 in Nicaragua). Shortage of workforce causes strain on care for the vulnerable populations, especially in rural areas in LIC and LMIC.
Concerning research and genetic testing, efforts have been made to include underrepresented Latin American populations in PD research, but there still are limitations. For instance, indigenous and ethnic groups such as Quechuas, Nahuas, Aymaras, Mayas, Ki’ches, Mapuches, Kaqchikel, Mam, Mixtecos and Otomies are vulnerable due to the incapability to be found and reached in the US.
Genetic testing, particularly for movement disorders, is essential nowadays due to our wide miscegenation in mestizo populations. Additionally, the influence of epigenetics must be kept in mind. Regardless of current research focused on PD’s genetic basis, almost 90% of the studies are carried out in European and American ancestry populations, whereas the rest are left behind.
As regards treatment options, one in three movement disorders specialists consider drug availability in their country as the most important determinant when deciding which antiparkinsonian medication to prescribe.
Recalling the WHO essential drugs, LD/CD is available in most countries, whereas other antiparkinsonian drugs are not (i.e. pramipexole, rotigotine, selegiline, safinamide, apomorphine and amantadine). These drugs are not always provided by social security, and this number can be as low as 30% in some countries. In consequence, out-of-pocket expenditure accounts for 66% of the total health expenditures, affecting the economy of patients. On the other hand, deep brain stimulation is available in 8 out of 10 countries, of which only 6 out of 10 counts on directional rechargeable DBS.
It is a reality that diagnostic, genetic, therapeutic and research resources are limited for these specific populations worldwide. This is not only true in Latin America but in Africa and Asia, too. A change is needed to promote transformation and foster social conditions, through strategies for balanced relations among government, society and individuals that warrant good health, where freedom, equality and social justice can be ensured for all.
Dr. Britt Stone:
In late May, I had the honor of speaking at the Pan American Movement Disorders Congress for a plenary session discussing how we deliver Parkinson disease care to underserved populations in the Americas. My topic was on the United States.
To briefly summarize, we first must define who the underserved are. It is evident that there are various barriers to care—socioeconomic inequality, geographic isolation, shortage of healthcare providers, lack of healthcare literacy, and the historical discrimination of groups based on gender and ethnicity.
The rural versus urban divide is a real one. I have practiced in metropolitan areas with more movement disorders neurologists in one zip code than there might be in a tristate area in another part of the US. There also are often more resources in regard to support groups; access to clinical trials and research; ancillary services such as physical, occupational, speech, and cognitive therapies; and community resources for patients and their families in cities.
In addition, there is also the understandable hesitance from some populations to present to medical centers or enroll in research because of historical mistreatment or neglect, or who have resigned themselves to believing that there is nothing that can be done for them because of a paucity of knowledge or limited access to specialized care.
In the aftermath of the COVID pandemic, new challenges have emerged while new opportunities have appeared. Prior to the pandemic, it was difficult to obtain reimbursement for telemedicine visits; it was also less common for exercise classes, support groups, or psychotherapy to be offered virtually, but these are all things that have become common place in the post-COVID era. We have also had a more acute knowledge of the threadbare nature of our healthcare system—not just in neurology, but also in primary care, mental health services, and home health.
Hopefully this awareness stimulates novel solutions to some of these problems. Making sure that primary care providers know how to identify symptoms of Parkinson’s disease so that these patients can be referred to neurologists in a timely manner is a good place to start. Also, given the physician shortage, ensuring that advanced practice providers in neurology are trained in basic management of Parkinson’s disease and an awareness of when to refer to a movement disorder neurologist for further management is important. Telemedicine for maintenance of follow up care helps to keep patients connected to their doctors, even if their disease advances and there are transportation difficulties, or if someone ends up in a nursing facility. It goes without saying that we have to recruit more medical trainees to become movement disorders specialists and movement disorders nurses. Raising awareness in the general population about symptoms of Parkinson’s disease versus normal aging, so that individuals know when to see the doctor is vital. Lastly, educating physicians on the ways that implicit bias impacts the care that we administer is key. In doing this, there is a level of self-awareness that then can be applied on both the personal and systemic scales in helping to dismantle inequities.