A Call to Action: Ensuring Just and Equitable Care for Individuals with Tuberculosis
Tuberculosis (TB) remains an important public health priority. The United States has controlled TB’s spread through aggressive screening and treatment programs. These programs save lives and protect communities from new infections by identifying individuals with TB before they get sick and before they become contagious. Treatment during this stage (known as latent TB) also requires fewer and less toxic medications. TB screening and treatment programs are particularly important for immigrants and new Americans, who are among the populations most frequently affected by TB. For example, up to 20% of refugee children may have latent TB when they first arrive in the U.S. However, the primary latent TB treatment, isoniazid (INH), is not without risks – the most severe being liver failure. Though extremely rare, INH-related liver failure can be fatal, and the only treatments are liver transplant and supportive care.
As physicians we are left with a situation where our desire to ensure public health is tested by the ethics, policies and politics surrounding health care for a particularly vulnerable group: undocumented immigrants. Liver transplant is rarely available to undocumented immigrants, as organ transplant candidacy considerations take into account access to post-transplant health care. Unfortunately, the majority of undocumented immigrants are uninsured. Furthermore, undocumented immigrants are not eligible for Medicaid. Emergency Medicaid, for which they are eligible typically covers life-threatening emergency conditions but explicitly does not cover organ transplantation. Undocumented immigrants are also barred from buying insurance through health insurance exchanges established by the Patient Protection and Affordable Care Act. So while an uninsured U.S. citizen could spend down assets to become eligible for Medicaid or buy a marketplace plan, undocumented immigrants, unless they have insurance through their employer or other means, are uninsurable and unable to receive equitable medical care from a public health program.
Nonetheless, the public health community asks undocumented immigrants to treat their latent TB both to protect themselves and also to benefit the public health by preventing the spread of TB. But because latent TB does not always transform into the dangerous, contagious form of the disease known as “active TB”, not everyone who is treated for latent TB will personally benefit from having been treated. Although TB treatment-related liver failure is extremely rare, as stated in our recent commentary, asking one group of individuals to incur a higher risk of harm due to treatment is unjust. Fortunately, there are policies that could ensure equitable care for these particularly vulnerable groups.
The first approach would be to ensure that more individuals being treated for TB have access to health insurance. States could cover liver transplant and post-transplant care for liver failure related to TB treatment under Emergency Medicaid. Alternatively, states could expand eligibility for the regular Medicaid program and/or CHIP. Washington, California and New York, among other states, have already ensured that children’s eligibility for CHIP and/or Medicaid is based upon age, household income and state residency, not immigration status. The Dream Care Coalition is working to bring the same kind of coverage to children in Pennsylvania.
The second approach would be to create a compensation fund for individuals with TB-treatment-related injuries. Compensation funds have been established for injuries related to other programs where public and personal health are both at stake. For example, the National Vaccine Injury Compensation Program covers damages, wrongful death, lost wages and medical expenses for a specific set of injuries related to vaccines and is funded by a $0.75 tax on all vaccines. Similarly, the federal Countermeasures Injury Compensation Program provides compensation for lost employment income and unreimbursed medical expenses for injuries related to medications or other measures used to prevent or treat certain public health emergencies, such as pandemic flu or bioterrorism security threats, including anthrax.
Screening and treating TB in undocumented immigrants is critically important. Screening and treatment not only protect these individuals from active TB, which can otherwise lead to death or severe disability, but also protect the public health. Morally and ethically, the public health community, physicians and policymakers should establish a mechanism to ensure that everyone who has done their part to control the spread of TB also has access to potentially lifesaving care for treatment-related injuries.