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In chapter seven of the Tick-Borne Disease Working Group 2018 Report to Congress, the working group discusses access to care. Some of the burdens those with tick-borne disease face accessing care are the same health care system burdens faced by any patient. Some are similar to those common to other conditions that cause disability. And some are unique to the controversy and lack of information about treatment that complicate dealing with Lyme disease and other tick-borne diseases.
Most people with Lyme disease make a full recovery. Others face life-long health effects that are poorly understood, leading to varying treatment and monitoring protocols across the country. The report cites statistics that half of chronic Lyme disease patients travel more than 50 miles to see a doctor and that the average chronic Lyme disease patient goes to more than five times as many doctor visits per year as the average American.
In order to improve the ability of people with tick-borne disease to access care, the Tick-Borne Disease Working Group (TBDWG) recommends:
7.1 Create a Federal repository of information on Lyme disease and other tick-borne diseases.
Unless they have a particular interest, many of the physicians a tick-borne disease patient will come into contact with have very little information about current diagnosis and treatment recommendations. Furthermore, the information they do find may be outdated or inaccurate. The uncertainty surrounding tick-borne disease may make it seem like an area of treatment best left to someone else. If providers do wade into diagnosis and treatment, obstacles from insurance payers can be difficult to overcome. The TBDWG recommends creating a place where health care professionals can obtain the up-to-date information they need.
The repository would also contain information meant for other professionals that interact with people with tick-borne disease. For example, teachers need information about the variety of psychiatric and cognitive symptoms of tick-borne disease that may affect their students. Also, teachers are in a uniquely powerful position to educate about prevention.
7.2 Allocate increased funding for tick-borne disease in the areas of research, treatment, and prevention proportional to the burden of illness and need.
The TBDWG recommends that sub-groups that experience higher impacts of disease require increased proportional funding. For example, tick-borne disease in children can derail education and change the course of their entire lives.
Ensure the rights of those dealing with Lyme disease and tick-borne disease and conditions by reducing the burden of the processes under which patients are currently diagnosed.
7.3 Protect patients from employment discrimination.
In our discussion of disease surveillance last week, we explained that some regions of the country with low incidence may show on CDC reports as zero reported cases because of privacy regulations. Due to these limitations, CDC reports may be used to question a diagnosis of Lyme disease. Furthermore, CDC surveillance criteria for interpreting laboratory reports may be used as a clinical interpretation to deny insurance coverage.
The same information process that informs approval of insurance claims also affects workplace exposure and workers compensation. In at least one case, cited in the report, an employer was found liable for workplace exposure to ticks and their pathogens. However, it took a lawsuit for the four employees to receive compensation and for workplace safety measures to be improved.
7.4 Protect students of all ages from discrimination.
While schools are currently required to comply with a variety of legislation to help students with disabilities access education, the waxing and waning nature of tick-borne diseases makes the situation more complex. A student may not need a 100% home-based curriculum if they are sometimes able to attend school. Attending school when they are able may have benefits for them, such as countering social isolation. The TBDWG recommends including in the education resources information for teachers and school administrators about the fact that tick-borne disease can cause disabilities that make students eligible for the various disability programs and how to respond to these disabilities.
7.5 Protect patients from health care and disability insurance coverage and reimbursement policies that are unduly burdensome.
The TBDWG identifies four systematic barriers to care, one of which is engagement with managed care and HMOs. In their description of the effects of this barrier, they describe the demoralizing effects of tick-borne disease and delays in treatment.
7.6 Protect the rights of licensed and qualified clinicians to use individual clinical judgement, as well as recognized guidelines, to diagnose and treat patients in accordance with the needs and goals of each individual patient.
In response to the burdens placed by insurers, a variety of wellness and health care providers have set up their practices to accept cash payments from patients who have limited options. Some of these providers use medical guidelines and the latest scientific information. The TBDWG cites the lack of diversity of approaches to the guidelines as one factor that forces physicians out of taking care of patients, or into taking care of them for cash only.
This limitation of care makes patients yet more desperate. The combination of restrictive guidelines and cash payment requirements leaves patients vulnerable to scams. The TBDWG suggests that a broader set of accepted guidelines may not only allow treatment but also protect patients from those who would take advantage of them.
7.7 Testing and Diagnostic Bands: How They Are Used Today and What That Is Doing to Patients.
The TBDWG characterized item 7.7 as a “major issue” rather than as a recommendation. New tick-borne disease patients are dropped into a world they may be ill-equipped to manage. Instead of receiving clear-cut diagnoses from medical tests, they face uncertain test results and clinical interpretations that can be all over the map. What should they believe and whom should they trust?
The working group report has certainly not resolved that problem. Critical stakeholder reactions have been released from different viewpoints. Access to care issues are complex, involving many agencies and sources of information. Bringing organizations and people together to resolve these issues remains an elusive goal.
Want to read more of our posts about the TBDWG report? Links below:
- Introduction to the TBDWG
- Human Surveillance of Tick-borne Diseases
- Issues with Access to Care
- Prevention
