How will the result of the American election affect rare disease care?

How will the result of the American election affect rare disease care?

On Tuesday, November 8th, 2016 tens of millions of Americans flooded polling stations around the country to vote for a candidate to be the 45th President of the United States. The past year and a half of campaigning from presidential candidates Hillary Clinton and Donald Trump have been scrutinized across the globe. It has been a campaign period full of controversy, and personal attacks were taking away from what should be at the centre of the election: policy. America is a strong and influential country that has long been looked at as a leader among nations, so which policies they adopt has a substantial effect on the world. One important issue this election year is the government’s role in providing health insurance, and affordable prescription medication. How will each candidate’s health policies on these matters affect patients with rare diseases?


“Currently, healthcare in America is mostly privatized which causes inequality in receiving quality healthcare for individuals with low income and poor health.”

Currently, healthcare in America is mostly privatized which causes inequality in receiving quality healthcare for individuals with low income and poor health. There are some government programs such as the Children’s Health Insurance program, Medicare, Medicaid and more recently the Patient Protection and Affordable Care Act (PPACA), or as it is more commonly known, Obamacare.1 As of June 2015 over 30 million Americans have gained insurance under Obamacare since its implementation in 2010.2 Obamacare brought many changes to the health insurance industry in America, it not only made health insurance more affordable but also increased the quality of health insurance by setting new standards. One provision implemented banned health insurers from imposing annual, and lifetime caps on essential benefits, such as chronic disease management, and prescription drugs.3,4 Another important aspect of Obamacare which influences individuals with a rare disease is prohibiting insurers from denying coverage to individuals with pre-existing conditions.5 This provision means that individuals that have a lifelong rare disease will be able to purchase coverage without discrimination.

Although Obamacare has proven to be a big step forward for American healthcare, there is still progress to be made. The changes in standards for health insurance providers means they had to find new ways to increase their profits. One of the ways insurers did this was by increasing the use of specialty tiers in prescription coverage, which requires patients to cover more for medications that are more expensive, and less common.6 This specifically targets patients with rare diseases because their conditions often require the use of uncommon, expensive medication such as orphan drugs. If patients with rare diseases are not able to afford the treatment they require it can have a severe negative impact on their health, and in some cases be lethal. This is the state of healthcare in America at present, but how will it change after the election? Analyzing the two main candidates' policies can give good insight into how their presidency could affect patients with rare diseases.

Hillary Clinton represented the Democratic Party in the 2016 election, so her policies are well aligned with the health policies implemented under President Obama. Clinton plans to keep and enhance Obamacare and her provisions in doing this would increase health insurance coverage by an estimated 14.5 million people.7 Furthermore, her proposed policies would favour coverage of individuals with low income and of poor health. By maintaining Obamacare the ban on annual and lifetime caps, and judgement based on pre-existing conditions would be upheld. For patients with rare diseases, this means they could receive health insurance without judgement of their condition and receive the proper care they need without worrying about reaching an annual or lifetime cap imposed on them by their insurer.


“Altogether, Clinton’s policies on prescription drugs would benefit the rare disease community by reducing out-of-pocket costs for patients with rare diseases.”

Clinton’s policies also include provisions to make prescription drugs more affordable. This is especially important for individuals with rare diseases because orphan drugs can be outrageously expensive. Clinton has proposed that individuals should be able to purchase and import drugs from abroad that meet federal safety and quality standards.8 Furthermore, Clinton aims to increase competition between pharmaceutical companies by putting more competitors on the market.8 If successful, both these policies could potentially help to lower the cost of prescription drugs for Americans. Specifically, the latter policy is expanded to increase competition for specialty drug companies, which often don’t have any competition; this would have a significant impact on the cost of orphan drugs for patients with rare diseases. Finally, Clinton has proposed imposing a monthly cap on out-of-pocket cost for prescription drugs at $250 USD/month.8 This would also greatly benefit individuals with rare diseases, as previously mentioned costs for orphan drugs can be extremely high and putting a cap on what patients have to pay will greatly benefit those whose monthly costs exceed $250. Altogether, Clinton’s policies on prescription drugs would benefit the rare disease community by reducing out-of-pocket costs for patients with rare diseases.


“By repealing Obamacare rare disease patients would lose the ban on annual and lifetime caps and could be discriminated against by health insurers based on their pre-existing condition.”

Donald Trump represents the Republican Party, and his policies dramatically differ from those of Hillary Clinton and the Democratic Party, especially in regards to health insurance. Trump has proposed that he would immediately ask Congress for a full repeal of Obamacare, and replace it with block grants to each state.9 This combined with the other provisions Trump intends to enact would decrease the number of Americans with health insurance from 251.6 million to 173.7 million insured.10 Furthermore, Trump's policies tend to favour Americans with a high income and in good health.10 Evidently, these changes would likely not support patients with rare diseases, as they could potentially lose the insurance they gained under Obamacare and would be disadvantaged as they are not considered to be in good health. Additionally, by repealing Obamacare rare disease patients would lose the ban on annual and lifetime caps and could be discriminated against by health insurers based on their pre-existing condition. Overall Trump’s policies on health insurance would only benefit individuals with a high income; everyone else, especially patients with rare diseases, will feel some negative effect on their healthcare.

Trump's policies on pharmaceutical drugs are more aligned with Clinton's with a few small differences. Trump also proposes to allow drugs to be purchased and imported from abroad as long as they meet safety standards.9 He also wants to encourage competition between pharmaceutical companies by reducing barriers to market entry, thus increasing the amount of competitors on the market.9 Both these policies would lower prescription drug costs, although unlike Clinton, Trump does not specify whether his increased competition policy would extend to specialty drugs, such as orphan drugs.


“Clinton would make it easier for rare disease patients to both get health insurance, and afford the appropriate prescription medication they require.”

Analyses of both candidates' policies reveal that Hillary Clinton’s policies tend to favour Americans living with rare diseases compared to Donald Trump’s policies. Although both candidates want to improve the healthcare system in America, Clinton would make it easier for rare disease patients to both get health insurance, and afford the appropriate prescription medication they require. With the rising costs of healthcare and prescription drugs, providing rare disease patients with the resources to get the care they need is imperative. On November 8th, 2016 Americans voted for their 45th president and elected Donald Trump. They also voted for health policies that will change the way healthcare is provided for everyone in America, especially those with rare diseases. Although Trump’s policies do not look promising for those with rare diseases, these estimates are based on his policies throughout the campaign period. Over the next four years Americans, and people all around the world will watch to see which policies Trump does and does not enact during his presidency.


Works Cited:

1. Finding Health Insurance | USAGov. Usagov. 2016. Available at: https://www.usa.gov/finding-health-insurance.

2. Blumenthal D, Abrams M, Nuzum R. The Affordable Care Act at 5 Years. New England Journal of Medicine. 2015;372(16):2451-2458. doi:10.1056/nejmc1510015.

3. Lifetime & Annual Limits. HHSgov. 2014. Available at: http://www.hhs.gov/healthcare/about-the-law/benefit-limits/index.html.

4. ObamaCare Essential Health Benefits. Obamacare Facts. 2016. Available at: http://obamacarefacts.com/essential-health-benefits/.

5. Dorman D. Proposed Rules for Health Insurance Market Reforms and Essential Health Benefits - NORD (National Organization for Rare Disorders). NORD (National Organization for Rare Disorders). 2012. Available at: https://rarediseases.org/proposed-rules-for-health-insurance-market-reforms-and-essential-health-benefits/.

6. Conschafter A. Specialty Tiers Complicate Rare Disease Treatment. IfPA’s Patient Access Policy Blog. 2016. Available at: http://allianceforpatientaccess.org/specialty-tiers-complicate-rare-disease-treatment/.

7. Eibner C, Nowak S, Liu J. Hillary Clinton's Health Care Reform Proposals: Anticipated Effects On Insurance Coverage, Out-Of-Pocket Costs, And The Federal Deficit. The Commonwealth Fund; 2016.

8. Hillary Clinton’s Plan for Lowering Prescription Drug Costs. Hillaryclintoncom. 2016. Available at: https://www.hillaryclinton.com/briefing/factsheets/2015/09/21/hillary-clinton-plan-for-lowering-prescription-drug-costs/.

9. Healthcare Reform. Donaldjtrumpcom. 2016. Available at: https://www.donaldjtrump.com/positions/healthcare-reform.

10. Saltzman Eibner C. Donald Trump's Health Care Reform Proposals: Anticipated Effects On Insurance Coverage, Out-Of-Pocket Costs, And The Federal Deficit. The Commonwealth Fund; 2016.


Cite This Article:

Smith E., Zheng K., Chan G., Ho J. How will the result of the American election affect rare disease care? Illustrated by M. Yi. Rare Disease Review. January 2017. DOI:10.13140/RG.2.2.23325.51681.

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