Patients in the U.S. who are both low-income and undocumented immigrants may be aware of their treatment choices and associated trade-offs, but without the means to purchase services, their options are limited. Safety-net hospitals often cover as much care as they can, some state programs provide emergency and/or prenatal care, and donations from pharmaceutical companies may help fill the gap. However, undocumented immigrants cannot get care through traditional Medicaid insurance (for low-income and disabled patients), which is funded jointly by the states and federal government. The insurance-coverage and access-to-care problems are ever present in other countries with universal health insurance, as well, because the safety net systems are weakened when nearly the entire population has coverage, yet the refugee and immigrant crisis across the globe continues to grow. This leaves major voids in care for chronic and acute conditions that arise for this vulnerable population, many of whom are long-term residents who have escaped terrible tragedy and threats to their livelihood.

Although access to comprehensive health insurance is non-existent for undocumented immigrants, select states provide support through programs often limited by class of service. That is, treatment options are not based on costs or effectiveness, but rather on categories of treatments classified as emergency care or prenatal care. For example, in the case of a patient presenting with cancer, chemotherapy is not considered “emergency care” for federal funding purposes, but safety-net hospitals can procure pharmaceutical donations, use state funds, or offer charity care. More concerning, however, is that patients who are undocumented immigrants are unable to gain access to non-drug regimens, such as stem cell transplant for leukemia, which often provides the best chance for durable remission (essentially a cure). They can only receive less effective chemotherapy through hospital/pharmaceutical charity care. Under the current approach, these patients may end up with a terribly painful and possibly drawn-out and expensive death in the same hospitals that cannot treat them optimally up front. In the case of prenatal care, because of the fear of accessing the healthcare system and hazard of being “found out”, pregnant women often forgo prenatal care, increasing the probability of complications and poor birth outcomes, and, as a result,  infants who are U.S. citizens with higher health risks. Neither of these health trajectories is rational or compassionate.

Undocumented immigrants continue to arrive, fueling the need for cost-effective care management. This requires high quality analyses that weigh the evidence and track health outcomes to make the case for or against coverage of comparative treatments (including not treating or delaying treatment) and facilitate informed healthcare decision making. Without objective studies, we risk allowing emotionally driven arguments to fuel detrimental changes in immigration and healthcare. In the current environment of fear and uncertainty, patients who are undocumented are going under cover, missing appointments, skipping treatments, and declining to give their true names/addresses to providers, all of which are likely to lead to worse health outcomes and cost inefficiencies. With expertise from members of the Society for Medical Decision Making and beyond, we can help inform the current irrational approach to caring for the most vulnerable in society. We can use our tools and knowledge to change policy and make noise about this tragic situation.

Note: The views expressed here are my own. I appreciate the thoughtful conversations and communications I had about this topic with Domna Antoniadis, Esq., Ahmed Bayoumi, MD, MSc, and Olga Kostopoulou, PhD, MSc, but they have no responsibility for the content of this commentary.

Selected sources for further reading:

The New England Journal of Medicine

ASCO Connection

NYC Human Resources Administration - Office of Citywide Health Insurance Access

Health Resources and Services Administration

Undocumented Patients

Explaining these apparently irrational choices is not as simple as blaming Jenny McCarthy for popularizing the myth that vaccines cause autism.  Early in 2017, environmental lawyer Robert F. Kennedy Jr. and actor Robert De Niro offered $100,000 to anyone who could prove that vaccines are safe. The myth will not die, despite Andrew Wakefield admitting he fudged the data published in a 1997 Lancet article that linked autism to the MMR series. The decision to vaccinate is seen by some parents as a choice of uncertainty and they turn to social networks and social media for information. They assess the risk of vaccination as higher than the risk of diseases they have never seen. Increasing mistrust of the mainstream media, big pharmaceutical companies, and healthcare leads to doubting the data of vaccine safety. Psycho-emotional responses to the pressure to vaccinate can blunt the cognitive appraisal of information and health promotion efforts. 

Couple these individual beliefs with the structural barriers to vaccination, such as lack of access, and vaccine hesitancy as well as refusal may not be so irrational, at least when considered from the patient’s perspective. Healthcare providers should engage in shared decision making with every parent or patient for whom vaccines are appropriate. Information about vaccine safety, presented in easily understood forms, needs to be provided at every opportunity -- even after a parent has consented to the vaccines. Some hesitant parents may acquiesce but leave the clinic and not return for follow up doses. Moreover, parents who are still uncertain about vaccinating their child may continue to seek information from unreliable sources to address the cognitive dissonance they feel. Lastly, as with all shared decisions, it is appropriate for a provider to emphasize evidence-based reasons for vaccination while avoiding direct declaration of the parent’s decision to delay or refuse the vaccine as irresponsible or ignorant. Doing so can destroy the provider-patient relationship and prevent future opportunities to change the decision maker’s mind. 

The President has not yet sent Congress a proposed budget for the next fiscal year, though that often happens when administrations change. What we have is his “skinny budget”, somewhat of an executive summary, which proposes a $5.8 billion cut for the National Institutes of Health (NIH), almost 20% of its current budget. This would reduce the NIH funding to what it was in 2001 (not adjusted for inflation). A second proposal involves folding the Agency for Healthcare Research and Quality (AHRQ) into the NIH, though it isn’t clear whether this would bring the NIH any extra money. Other research agencies may be facing 10% cuts.

This is driven by the Trump administration’s desire to raise defense spending and reduce taxes, while lowering domestic spending in many areas. However, this is only a proposal. Agencies that fund research have many advocates and often have strong support in Congress, making it unlikely the proposed cuts will be enacted in full. Even so, the ultimate funding levels for the agencies are likely to be less, not more, than what they are receiving now.

Failure to repeal/replace the Affordable Care Act is good news for academic medical centers. Millions of people would have lost health insurance had the bill passed and medical centers would have been badly hurt financially as fewer people would be able to pay for their care. This would have limited the centers’ ability to provide internal funds for research or education. In addition, the Patient-Centered Outcome Research Institute (PCORI) would have lost its funding had the AHCA passed. Whether another attempt to repeal/replace the ACA will occur later this year is unclear. Even though this was a major Republican campaign priority, the problems the attempt ran into will make legislators nervous about trying again.