\n\n“the roots of this deadly problem long predate monkeypox outbreaks or the Covid-19 pandemic. The US has always had a fragmented health care system, with widely disparate experiences for patients based on state, insurance company, or hospital chain. Without systems to reliably record and share population-level data between decision-makers, health care workers can\u2019t focus on helping the patients who need it most. The consequences are worse for marginalized people \u2014 such as Indigenous people, people with disabilities, or youth at risk for teen pregnancy \u2014 who were already facing inadequate care before the pandemic.<\/p>\n\n\n\n
It doesn\u2019t have to be this way. The US has an opportunity to learn from the tough lessons of the last few years and build on work to improve transparency and data sharing. With monkeypox already a global public health emergency<\/a>, it\u2019s vital for the data to be available, promptly and accurately, to coordinate an effective public health response.”<\/p>\n\n\n\n …<\/p>\n\n\n\n “Data comes in from over 900 health systems<\/a>, or chains of hospitals under shared management; the largest include about 200 hospitals. But that\u2019s just a fraction of the over 6,000 hospitals<\/a> across the country. So when, for example, positive test results for Covid-19 or monkeypox, or cases of workplace exposure<\/a> to pesticides, have to be reported to the state, public health boards<\/a> in every state must coordinate with hundreds of different organizations and aggregate their data before they can share it with federal agencies. Except during an officially declared public health emergency \u2014 which, for monkeypox, is only a week old \u2014 the CDC has limited legal power<\/a> to mandate reporting.<\/p>\n\n\n\n Data also isn\u2019t collected the same way everywhere. There is a large number<\/a> of different electronic health record systems currently in use in the US. They allow medical professionals to document a patient\u2019s diagnosis and treatment, and in theory, share them more efficiently than in the days of paper-based records. But the software systems aren\u2019t designed to be compatible with each other, so they cannot easily exchange data<\/a>.”<\/p>\n\n\n\n …<\/p>\n\n\n\n “Undertesting doesn\u2019t just affect the case numbers reported, but hurts patients\u2019 access to treatment. Tecovirimat, or TPOXX, an antiviral drug that is most effective for treating monkeypox if started early, can\u2019t be prescribed until a test comes back positive<\/a>, and since it\u2019s not officially approved by the FDA for monkeypox treatment, doctors need to jump through bureaucratic hoops<\/a> to prescribe it. This leaves many patients suffering from untreated painful lesions for days or weeks.”<\/p>\n\n\n\n …<\/p>\n\n\n\n “With monkeypox, the US can lean on the systems and infrastructure built during the Covid-19 pandemic, but some programs, like those that reimburse providers<\/a> for treating uninsured patients or provide free Covid-19 tests, vaccines, and antiviral drugs to community health centers<\/a>, were already scaled down<\/a> after funding was decreased. In order to pull together a national response, the US needs straightforward, transparent data reporting<\/a> that can be compared and combined on a national level.<\/p>\n\n\n\n The final difficulty will be in keeping this momentum going. The declaration of a new public health emergency for monkeypox will help keep federal funding<\/a> flowing toward projects like the new NCATS OpenData portal<\/a> for monkeypox, but the need for better health care infrastructure won\u2019t end when the emergency does. In a chronically underfunded<\/a> public health system, short-term efforts may not<\/a> be enough.” <\/p>\n\n\n\n