Rare disease care during and after a major storm
Hurricane season is approaching, and no one knows that better than the residents of Houston, Texas and the surrounding area. On August 25, 2017, Hurricane Harvey hit Houston. It was classified as a Category 4 hurricane, resulting in a flash flood and destruction.1 With many comparing Harvey to Hurricane Katrina, which hit New Orleans in 2005, it was obvious the damage was extensive and the effects on the human population severe. Surviving a severe tropical storm is difficult for anyone, but those with an existing chronic disease are at an even greater disadvantage from the moment the storm hits.
Living with a rare disease is difficult to begin with, as daily struggles vary but often include taking orphan drugs, difficulties with mobility, and living a particular lifestyle. In some cases, this includes a specific diet, physical therapy, and the reliance on others to provide care. When a storm hits and evacuation is recommended, it can be troublesome for rare disease patients to leave their homes. Transport can be difficult, and for those with required therapy equipment, those must be left behind. Once they have evacuated their homes, a new challenge arises: finding a place to stay that is accessible and has access to required treatment equipment. Evacuating their homes is just the first challenge rare disease patients will face in a major storm.
The next challenge will be trying to find the proper medication for their disease. Flooding causes closures of pharmacies, hospitals, and medical centres, making it difficult to find a location that can provide orphan drugs to treat rare diseases.2 Lack of access to pharmacies with orphan drugs can become an even greater problem when drugs are left in a flooded area and become damaged by storm water, making them unsafe for consumption.3 All of these challenges, combined with shortages of open medical care centres can create a potentially dangerous situation for patients that require medication and do not have access to it. The lack of proper care systems in the face of a major storm needs to be addressed so everyone can feel safe after such an event.
Another factor to be considered is the long-term effects a flood can have on the health of individuals with a rare disease. Water damage can cause mould spores to grow in homes, which may go undetected and spread. Mould spores generally only cause mild reactions in humans, but can be especially dangerous to people with existing autoimmune diseases who could become seriously ill.4 Another consideration is the lasting effects on mental health, as post-traumatic stress disorder and depression have both been shown to have increased rates in individuals after a major storm.5 After Katrina, it was found that those who experienced higher loss and stress from the storm were more likely to have worse health outcomes.6
In the U.S., many other major storms (e.g. Katrina) have wreaked havoc on civilian health, and as such there have been advancements made in recent years for better emergency preparedness. Katrina led to the closure of many hospitals and care centres in New Orleans, which meant fewer hospital beds were available for patients.7 Another major healthcare issue which stemmed from Katrina was an increase in patients with uncompensated healthcare due to job loss in light of the storm. This problem escalated by the loss of medical residents from medical schools in the area. Medical residents are the main care providers for underinsured citizens in major U.S. cities, and without funding for these residents, there was not proper care for the underinsured in New Orleans.7 Furthermore, the loss of physicians and nurses led to bottlenecks at hospitals which greatly reduced the quality of care in the city.7
Fortunately, policymakers and healthcare professionals have learned from Katrina, and some improvements were made that affects Harvey recovery. Harvey is the first major storm since the U.S. federal government revised the emergency preparedness standards for hospitals. Healthcare providers that receive funding through Medicare or Medicaid must have disaster preparedness plans in place – including relocation strategies for at-risk patients.8 Dr. Ruth Berggren was at Charity Hospital in New Orleans during Katrina and was in Texas as the head of the University of Texas-San Antonio’s Center for Medical Humanities and Ethics. In an interview, Berggren claimed, “they [Texas hospitals] were far better prepared, with regards to having protection for their power supply and water in these hospitals.”9 The Texas Medical Board has also made it easier for out-of-state care providers to practice in Texas with expedited permits and temporary licenses.10 This means physicians and nurses from out of state can provide care to those affected by the storm and is especially helpful with the increase in mental illness after such a disaster.10
Although there have been improvements in emergency preparedness, there is still progress to be made. According to WHO Europe, key aspects of emergency preparedness planning include measures to ensure water quality, sanitation, and food safety during and after a flood, measurement and tracking of mental health and wellbeing, and information and communication strategies, particularly for those who are most vulnerable.11 The destruction that has followed this hurricane season goes to show how important it is to have plans in place to care for people and protect the most vulnerable sectors of our population during and after a major storm. Despite some people’s dismissal of climate change, it is a real thing, and as it progresses, there will continue to be an increase in major storms. To protect the lives of all civilians, and especially those with rare diseases, there needs to be improved disaster relief and emergency preparedness.
1. CNN. Hurricane Harvey aftermath - CNN. CNN. 2017. Available at: http://www.cnn.com/specials/us/hurricane-harvey.
2. Christensen J. Harvey's floods close some hospitals; others hang on. CNN. 2017. Available at: http://www.cnn.com/2017/08/30/health/harvey-houston-hospitals/index.html.
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8. CMS. Emergency Preparedness Rule - Centers for Medicare & Medicaid Services. Cmsgov. 2017. Available at: https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertEmergPrep/Emergency-Prep-Rule.html.
9. Luthra S. Hurricane’s Health Toll: A Texas Doctor Taps Lessons From Katrina. Kaiser Health News. 2017. Available at: http://khn.org/news/hurricane-redux-a-doctor-tending-to-texans-taps-lessons-learned-from-katrina/.
10. Hsu A, Hersher R. Texas Expedites Help From Out-Of-State Health Care Providers. NPRorg. 2017. Available at: http://www.npr.org/sections/health-shots/2017/09/01/547816150/texas-expedites-help-from-out-of-state-health-care-providers.
11. WHO Europe. How flooding affects health. Eurowhoint. 2017. Available at: http://www.euro.who.int/en/health-topics/environment-and-health/Climate-change/news/news/2013/05/how-flooding-affects-health.
Cite This Article:
Smith E., Chan G., Palczewski K., Lewis K., Ho J. Rare disease care during and after a major storm. Illustrated by P. Taarea. Rare Disease Review. April 2018. DOI:10.13140/RG.2.2.29108.14722.