Today, we broke up with another doctor. We are on a quest to cure – or at least improve the quality of life – for one family member suffering from tickborne disease. I think it was doctor #16…but I’ve probably lost count over the last four years. Sometimes we have the talk with them, “It’s not you, it’s us” (and our pesky desire to get better). Other times we just ghost them and fade off into the ether without any drama.
Each new doctor brings a sense of renewed hope for a meaningful change in health status. But often effective treatments are short-lived or simply an empty promise. As a patient, you have a dualistic relationship with hope – you need some to continue pushing forward, but too much can lead to demoralizing disappointments.
As for our patient-doctor experiences, they run the spectrum. We see the occasional doctor, who is caring, forthright, helpful and understands his/her limitations – and other doctors without any of those traits. One doctor even said, “Stop crying and wear the insoles I gave you,” for the constant, unbearable foot pain. We see this philosophy often – it must be our fault, not the lack of treatment efficacy. We also had a highly trained doctor who said, “It’s idiopathic” (i.e. no known cause), but we “Should not waste more time looking for other answers.” We were advised to just manage the symptoms with drugs and maybe the pain would (miraculously) get better in time. This is the antithesis of scientific and medical progress.
As a caregiver and epidemiologist, I wonder – how did we get here? It would be easy to blame the doctors for their lack of knowledge and utility, but they are merely the patient-facing edifice of the wider U.S. healthcare system. As a collective – doctors, researchers, policy makers, government institutions – we simply know too little about tickborne diseases to effectively defend ourselves and our children, who are the most vulnerable to infection. Tickborne diseases have woefully underfunded research budgets. The National Institute of Health (NIH) is the preeminent governmental health research agency in the U.S., whose mission is “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability”[i]. In 2016, for Lyme disease, one of the most common tickborne diseases, the NIH spent just under $28 million on research[ii] (which is consistent with historic spending levels dating back to at least 2008). With more than 300,000 estimated new cases of Lyme disease EACH year[iii], it equates to an annual investment of less than $100 per case. Compare this to HIV, where the NIH spent more than $2.5 billion on HIV / AIDS research in 2016[iv] (excluding international grants) with an incidence of less than 50,000 new HIV cases[v] in the US per year. That is approximately $50,000 per HIV case, or 500 times the expenditure rate of Lyme disease. [Note: Similar rates are seen for Tuberculosis at roughly $24,000 per case ($240 million[vi] / ~10,000 cases[vii]) and West Nile Virus at about $20,000 per case ($46 million[viii] / ~2,200 cases[ix]) in 2016.]
Investing in HIV is certainly worthwhile, and I chose HIV, because its early history has many similarities to Lyme and other tickborne diseases today. Much like HIV’s historic path, tickborne diseases are complex with an ability to evade and weaken our immune systems; complicated by controversial treatment regimens, limited by weak diagnostic technology, and a threat to the U.S. blood supply for transfusions. Through collective efforts on advocacy, research, policy making and behavior change, the U.S. contained (or at least more effectively managed) the HIV epidemic here in the states decades ago. Lyme and tickborne diseases are not new, but we’ve been stalling on these life-threatening issues and knowledge generation for 30 years, while allowing hundreds of thousands of people to suffer.
In this chasm between patient suffering and medical knowledge, patients (and their doctors) are left to continuously experiment in the hopes of producing meaningful results. It’s all trial and error – should we take more or less pharmaceuticals, Western or Eastern medicine, short or prolonged antibiotics, five or twenty-five herbal supplements, paleo or gluten-free diets etc. The decisions are endless, but you must roll the proverbial dice if you want to keep playing and have a chance to get lucky. And as with any game of chance, you have pay to play. Each doctor’s opinion, treatment offered, and ‘experiment’ undertaken costs money – sometimes hundreds or thousands or even more. In our case, we’ve been fortunate to afford many rolls of the dice, but families often only get one or two chances to find life-changing care. Moreover, an environment with few clear medical answers enables uninformed (or even unscrupulous) actors to profit on patients desperate to better their health condition. This pulls resources away from potential solutions, weakens trust in the medical system and demoralizes the patient.
At the end of the day, tickborne disease has been – and continues to be – a great unknown. In our case, maybe the ‘idiopathic’ doctor is right, maybe there are no better answers. Or maybe #17 is our lucky number. We have an appointment booked next week with doctor #17 – we will hope for the best.
[i] NIH website: https://www.nih.gov/about-nih/what-we-do/mission-goals . Accessed May 3, 2018
[iii] Nelson et al. “Incidence of Clinician-Diagnosed Lyme Disease, United States, 2005–2010”. Emerging Infectious Diseases. www.cdc.gov/eid, Vol. 21, No. 9, September 2015. DOI: http://dx.doi.org/10.3201/eid2109.150417
[iv] NIH Research Portfolio Online Reporting Tools (RePORT): https://report.nih.gov/categorical_spending.aspx . Table Published on July 3, 2017. Access May 2, 2018. Based on word searches, excluded international recipients or projects listing research that is conducted internationally.
[v] Centers for Disease Control and Prevention. HIV Surveillance Report, 2016; vol. 28. http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Published November 2017. Accessed April 30, 2018
[vi] NIH Research Portfolio Online Reporting Tools (RePORT): https://report.nih.gov/categorical_spending.aspx . Table Published on July 3, 2017. Access May 2, 2018. Based on word searches, excluded international recipients or projects listing research that is conducted internationally.
[vii] CDC: National Notifiable Infectious Diseases and Conditions: United States, 2016. https://wonder.cdc.gov/nndss/static/2016/annual/2016-table1.html . Accessed May 3, 2018.
[viii] NIH Research Portfolio Online Reporting Tools (RePORT): https://report.nih.gov/categorical_spending.aspx . Table Published on July 3, 2017. Access May 2, 2018. Based on word searches, excluded international recipients or projects listing research that is conducted internationally.
[ix] CDC: National Notifiable Infectious Diseases and Conditions: United States, 2016. https://wonder.cdc.gov/nndss/static/2016/annual/2016-table1.html . Accessed May 3, 2018.