What is a rare disease? According to the US Food and Drug Administration, it’s an illness that affects less than 200,000 Americans. Though each illness is unusual by itself, rare diseases in aggregate affect approximately 30 million people in the United States, meaning 1 in 20 people will have a rare disease at some point in their life. Because of their migrant lifestyle, poverty rates, inadequate housing conditions, and lack of access to medical care, we believe that this ratio is much higher for farmworkers.
Rare diseases often start out as inexplicable symptoms that may go undiagnosed for years, but which eventually set off a long, unending series of medical appointments. A proper diagnosis can take time, and the treatment plan can require many trips to various doctors and specialists. For farmworkers, this presents a dilemma. In general, agricultural workers already go to the doctor less often than the general population, either out of fear, inaccessibility, high cost, or all of the above. If the symptoms are at all bearable, farmworkers will opt out, possibly go to a traditional healer, pray, and/or hope for the best. If things are put off long enough, conditions could worsen and prompt a visit to the Emergency Room, which farmworkers also can’t afford. It’s a tragedy that, in this rich country, only the well-off can afford regular, adequate medical treatment.
In 2014, USA Today told the story of Josué, a farmworker child who had been diagnosed with metachromatic leukodystrophy (MLD), a rare genetic disease that incapacitated him and required round-the-clock care. This meant that Josué’s mother, Reyna Melgar, had to quit her job picking grapes, rely on food stamps for groceries, and sometimes obtain diapers via a prescription. “A wealthier family would have an easier time providing quality treatment at home,” USA Today said. “For a mother like Melgar, just feeding her family and keeping up her home is often difficult.” Now that the public charge rule is taking affect, families like the Melgars will have an even harder time obtaining the things they need, because they’re afraid that accessing benefits they have every right to obtain will count against them in their immigration proceedings.
Like MLD, a significant portion of all rare diseases are genetic, but the National Human Genome Research Institute stresses that “that’s just part of the puzzle.” All too often there are environmental factors at play – many of which farmworkers are exposed to disproportionately. For example, the National Organization of Rare Disorders (NORD) lists Q fever, a type of zoonotic infectious disease that is most often contracted by farmworkers who work closely with livestock. The North Carolina Medical Journal also lists amoebic liver disease, brucellosis, yellow fever, encephalitis, typhus, and leprosy as rare diseases seen among the farmworker population – all of which are either caused or complicated by non-genetic factors like zoonosis, pathogens in the water, or inadequate basic hygiene.
That’s why AFOP Health & Safety pushes PREVENTION in our heat stress and pesticide safety trainings, including hand-washing, drinking clean water, and avoiding exposure to pesticides by using proper clothing and preventative actions. After all, “an ounce of prevention is worth a pound of cure.” Farmworkers often have not been thoroughly trained on or informed about the risks in their environment until our trainers come on the scene. For farmworkers who suffer from various illnesses – often as a direct result of their day-in day-out work in the fields – we advocate for well-funded migrant clinics and public policy that doesn’t penalize immigrants for accessing medical care. Because children like Josué are already suffering – why should they have to suffer more?
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