Rare diseases are the great case for UHC

The Economist’s article reporting on developments in gene therapy for rare diseases mentions something important:

The lessons from Glybera, the first gene therapy to be sold in Europe, still loom large. It cures a genetic condition that causes a dangerously high amount of fat to build up in the blood system. Priced at $1m, the product has only been bought once since 2012 and stands out as a commercial disaster.

Incredibly high need for the patient, but high development costs, essentially non-existent consumer base, no competition, no economies of scale, and no consumer bargaining power. Any one of those can destroy a market, but all at once? The only thing that would make it worse is if the patients can’t pay. Oh, right. They can’t. Because it costs $1m. If I’ve ever heard of a perfect government job, then this is it.

In the US, rare disease treatments will need to be covered by CMS and the associated costs spread across the entire tax base, because the free market will quite literally never be able to find a humane solution for this problem. Good luck using charity, vouchers or tax credits to cover a $1m treatment.

Health Fail – ACA Smoking Surcharges

Sometimes people’s behavior triggers, surprises and pleases me all at once. The ACA contains a provision enabling insurance providers to add a surcharge on the premiums of smokers, hoping to incentivize smokers to quit. Yale researchers report in Health Affairs how the smokers reacted to these incentives:

That’s right. Smokers dropped insurance coverage. I can’t even anymore.

The administration managed to put through a measure penalizing smoking without using the word that shall not be spoken in congress (tax) and got outsmarted (outdumbed?) by the smokers. I napped through most of my college macro economics course, but the one thing I took away from that class was that if you encounter a market failure that you want to correct, you tax it directly and never tangentially.

This is exactly why.

By the way, this is also why we desperately need to #MakeTaxesGreatAgain in U.S. politics. Treating the taxman as a pariah is tying down policymakers hands with foolish and disastrous consequences.

Lessons from Primary Care Reform in Iran

The organization and effectiveness of the rural primary health care reforms in Iran, focusing on the behvarz health workers and health homes, are reviewed and the potential for implementation in the Mississippi delta is analyzed. Review indicates that Iranian health houses are effective and clinically relevant to the health challenges faced by Mississippi, but currently not replicable due to political barriers. Recommendation is to develop health worker training curricula in preparation for a political event that removes these barriers. 


In 1979 the Islamic Republic of Iran inherited from the Shah regime a dysfunctional rural health care system created by years of neglect. The rural maternal mortality ratio was 370 per 100,000 live births and the rural infant mortality rate was 120 per 1000 live birthsi. In addition, the rural physician to population ratio was only 1:18000.ii The new government, however, was determined to fulfill the promises of the revolution to its rural supporters, and as part of the Reconstruction Jihad decided on the creation of a network of health houses staffed by minimally trained local health workers. Physicians criticized this as a collapse in the quality of care,iii but the government arrested hundreds of them and moved forward with the plans.


OrganizationThirty years after the revolution, these plans have grown into a network of 17,000 rural health houses staffed by 30,000 salaried behvarz (community health workers) that provide primary care services to 23 million Iranians, or 95% of the rural population.iv Each health house is generally staffed by 1 male and 1 female behvarz, who are responsible on average for 1500 people in their village and surrounding communities.v The behvarz is required to have 11 years of education and be elected by their community before receiving 2 years of community health worker training at a district facility. The community selection is an intentional policy design meant to increase community engagement, ensure cultural competence and decrease personnel turnover. Behvarz duties include collecting census information, maintaining family health records, maternal and child care, family planning, immunization, home visits, simple curative care, administration of medicines, and sanitation.vivii As the first point of contact, they are also responsible for basic triage and referring cases to one of 2300 primary care clinics at the district level, who provide ambulatory care for approximately 10,000 people.viii These clinics provide referrals for secondary care at district hospitals or tertiary care at provincial hospitals.


Access to primary care services in public facilities is free and is financed through federal budget transfers.ix In 1995 the Medical Services Insurance Organization funded by a general tax was created to provide insurance to civil servants, self-employed and special groups. In 2005 the Rural Health Insurance Program (RHIP) expanded this coverage to all rural citizens, which resulted in 95% rural insurance coverage.x Importantly, RHIP also formalized the family practice (FP) specialty in an attempt to improve quality of rural care. This has resulted in friction with the behvarz system, as the FPs don’t always provide superior care.xi


Twenty years of primary care reform in Iran resulted in significant advancements, including reduction of the fertility rate from 6.5 to 1.92, reduction of the rural infant mortality rate from 71 per 1000 live births to 30.2 per 1000 live births, reduction of rural maternal mortality ratio from 370 per 100,000 live births to 35 per 100,000 live births, and achievement of over 96% immunization coverage for DPT, MMR and Polio vaccinesxii. Most importantly, there was significant convergence towards the urban infant mortality rate and maternal mortality ratio, which had improved to 27.7 per 1000 live births and 22.0 per 100,000 live births respectively. By 2015 the expansion of the family practice specialty under RHIP further reduced the overall infant mortality rate to 13 per 1000 live births and the maternal mortality ratio to 25 per 100,000 live birthsxiii xiv. Avoidable death rates for rural and urban areas have also converged (37.40% and 36% respectively).xv In some areas the reforms have even enabled rural communities to surpass urban ones. Rural hypertension and diabetes prevalence, 17.2% and 5.6% respectively, are lower than in urban communities, where they are 18.4% and 8.5% respectively.xvi

Comparison to Mississppi

Mississippi is selected for comparison with Iran because the state was rated as the worst health system in the U.S. eight years in a rowxvii and a pilot program at Jackson State University is experimenting with Iranian-style health homes.xviii In 2012 the maternal mortality rate in Mississippi was 39.7 per 100,000xix, and in 2014 the infant mortality rate was 8.2 per 1,000 live births, ranking last in the U.S.xx Full immunization at age 2 was only 80.5% in 2007. Also, 67.8% of Mississippi adults were obesexxi, 11.6% were diagnosed with diabetesxxii and 22.7% smoked in 2009.xxiii Prevention and treatment is complicated by the worst physician shortage in the U.S.xxiv (159 physicians per 100,000) and only 82% of the population having insurance coverage.xxv

Takeaways for U.S. Policy

Mississippi’s challenges are similar to those faced by Iran and make the behvarz model important for local policy due to Iran’s superior performance on many of these metrics when compared to Mississippi. The success of the behvarz reveals two lessons that are critical for future primary care reforms in the state. The first is that dedicating funding to primary care and public health results in significant health gains for the population. However, this is nothing new and has been argued for decades by public health officials. The success of the Family Health Program in Brazil is another current example of this. The most important lesson, and the point where the Iranian behvarz differentiate themselves from the Family Health Program, is that the program is primarily administrated by non-physicians. Iran reveals that it is possible to have effective basic primary care with limited physician involvement. This has important implications for the way we should approach health system capacity building in rural areas and developing countries, a key U.N. goal after the recent ebola outbreak. Delegating basic and routine primary care tasks to minimally trained behvarz allows for highly trained physicians’ time to be allocated to more serious cases. In addition to the efficiency gains, physicians are likely to have improved job satisfaction due to decreased stress on their time and more meaningful utilization of their unique skills.

However, the political environment in the U.S. is poorly aligned to implement this model. The behvarz reforms were a conscious top-down commitment by the Iranian government to a primary care based health care system. In the U.S., on the other hand, Congress only committed $1billion per year to the Prevention and Public Health Fund – far short of the $12 billion per year level recommended by the Institute of Medicinexxvi. In addition, only 30% of Iranian government revenue is from taxation and 70% is derived from the sale of natural resources.xxvii This makes Iran’s generous primary health care transfers difficult to replicate. Finally, Iran was able to bypass the protests of the medical community against the behvarz through authoritarian oppression. This is not an option in the U.S. and the physician community is likely to lobby against behvarz as they do against nurse practitioners.xxviii This may even be happening in Iran, where the 2015 reform expanded FP and specialist financing, but did little for the behvarz.xxix

Facing these realities, the recommendation for policymakers in the U.S. is to prepare for a future political crisis that could be used as an opportunity to implement health homes by developing health worker certification curricula that could be quickly adopted.


[i] Mehryar, Amir. “Primary Health Care and the Rural Poor in the Islamic Republic of Iran.” (2004): n. pag. Web. 16 Feb. 2016.

[ii] Marandi, S. (2009). The Integration of Medical Education and Healthcare Services in the I.R. of Iran and its Health Impacts. Iranian Journal of Public Health, 38, 4-12.

[iii] Elizabeth A. Willis MA DHMSA & Jahangir Taghipour MD MRCS LRCP DThMed (1992) Effects of prolonged war and repression on a country’s health status and medical services: Some evidence from Iran 1979–90, Medicine and War, 8:3, 185-199, DOI: 10.1080/07488009208409045

[iv] Statistical Center of Iran. Databases Government of the Islamic Republic of Iran, SCI. Available from http://www.sci.org.ir/portal/faces/public/sci_en/sci_en.search.

[v] World Bank. 2008. Main report. Washington, DC: World Bank. http://documents.worldbank.org/curated/en/2008/06/16262698/islamic-republic-iran-health-sector-review-vol-1-3-main-report

[vi] Mehryar, 2004.

[vii] Rahbar, M., & Ahmadi, M. (2015). Lessons Learnt From the Model of Instructional System for Training Community Health Workers in Rural Health Houses of Iran. Iranian Red Crescent Medical Journal, 17(2), e2145. http://doi.org/10.5812/ircmj.2145

[viii] World Bank, 2008. Main Report.

[ix] World Bank. 2008. Background Sections. Washington, DC: World Bank. http://bit.ly/28MMdcb

[x] Lankarani, K.B., Ghahramani, S., Zakeri, M., Joulaei, H. (2015)
Lessons learned from national health accounts in Iran: Highlighted evidence for policymakers
Shiraz E Medical Journal, 16 (4), art. no. e27868, 3 p.

[xi] Motlagh, M. E., Heidarzadeh, A., Hashemian, H., & Dosstdar, M. (2012). Patterns of Care Seeking During Episodes of Childhood Diarrhea and its Relation to Preventive Care Patterns: National Integrated Monitoring and Evaluation Survey (IMES) of Family Health. Islamic Republic of Iran.International Journal of Preventive Medicine3(1), 60–67.

[xii] Mehryar, 2004.

[xiii] Infant Mortality Rate. World Bank, n.d. Web. 18 Mar. 2016. <http://data.worldbank.org/indicator/SH.XPD.TOTL.ZS?order=wbapi_data_value_2013+wbapi_data_value+wbapi_data_value-last&sort=desc&gt;.

[xiv] Ministry of Health and Medical Education (MOHME). Annual report of rural insurance & family physician programs. MOHME, Tehran; 2007 ((in Persian).)

[xv] Omranikhoo H, Pourreza A, Eftekhar Ardebili H, Heydari H, Rahimi Forushani A. Avoidable mortality differences between rural and urban residents during 2004–2011: a case study in Iran. International Journal of Health Policy and Management 2013; 1: 287–293.

[xvi] Kelishadi R, Alikhani S, Delavari A, et al. Obesity and associated lifestyle behaviours in Iran: fi ndings from the fi rst national non-communicable disease risk factor surveillance survey. Public Health Nutr 2008; 11: 246–51.

[xvii] Joulaei H, Lankarani KB, Shahbazi M. Iranian and American Health Professionals working together to Address Health Disparities in Mississippi Delta based on Iran’s Health House Model. Arch Iran Med. 2012; 15(6): 378 – 380.

[xviii] Hansen, Suzy. “What Can Mississippi Learn From Iran?” The New York Times. The New York Times, 28 July 2012. Web. 03 Mar. 2016. <http://www.nytimes.com/2012/07/29/magazine/what-can-mississippis-health-care-system-learn-from-iran.html&gt;.

[xix] “Pregnancy Related Maternal Mortality.” (n.d.): n. pag. Web. 17 Apr. 2016. <http://msdh.ms.gov/msdhsite/_static/resources/5631.pdf&gt;

[xx] “Infant Mortality Report 2015.” Mississippi State Department of Health (2015): n. pag. Web. 17 Apr. 2016. <http://msdh.ms.gov/msdhsite/_static/resources/6435.pdf&gt;

[xxi] Kaiser Family Foundation, statehealthfacts.org. Data source: Centers for Disease Control and Prevention, Behavioral Risk Factor Surveillance System Survey Data, 2009, unpublished data, at http://www.statehealthfacts. org/profileind.jsp?ind=91&cat=2&rgn=26.

[xxii] Kaiser Family Foundation, 2009

[xxiii] Kaiser Family Foundation, 2009

[xiv] “MS Worst in the Nation for Doctor Shortage.” – WLOX.com. N.p., n.d. Web. 05 Apr. 2016. <http://www.wlox.com/story/19918160/ms-worst-in-the-nation-for-doctor-shortage&gt;.

[xv] The Kaiser Family Foundation, statehealthfacts.org. Data source: Urban Institute and Kaiser Commission on Medicaid and the Uninsured estimates based on the Census Bureau’s March 2009 and 2010 Current Population Survey (CPS: Annual Social and Economic Supplements) , at http://www.statehealthfacts.org/profileind. jsp?cat=3&sub=39&rgn=26.

[xvi] “Issue Brief: The Prevention and Public Health Fund.” APHA, June 2012. Web. 14 Apr. 2016. <https://www.apha.org/~/media/files/pdf/factsheets/apha_prevfundbrief_june2012.ashx&gt;.

[xvii] Hajizadeh M, Connelly LB. Equity of health care financing in Iran. http://mpra.ub.uni-muenchen.de/14672. Accessed August 21, 2015. Published 2009.

[xviii] “AMA RESPONDS TO IOM REPORT ON FUTURE OF NURSING.”FierceHealthcare. N.p., n.d. Web. 28 Apr. 2016. <http://www.fiercehealthcare.com/press-releases/ama-responds-iom-report-future-nursing-0&gt;.

[xix] Moradi-Lakeh M, Vosoogh-Moghaddam A. Health sector evolution plan in Iran; equity and sustainability concerns.” Int J Health Policy Manag. 2015;4(10):637–640. doi:10.15171/ijhpm.2015.160