The Affordable Care Act & Insurance Issues in the Dysautonomia Community

As Washington politicians continue to play political football with healthcare, Americans find themselves struggling to know what’s going on and what will happen to our healthcare system in the near future.

While we are strictly a non-partisan organization, and it’s difficult to discuss health care policy and the Affordable Care Act (also known as “Obamacare”) without seeming to take sides, we thought this would be an important issue to discuss with our patient community.  We wanted to know how dysautonomia patients and caregivers felt about this important issue, so we conducted a survey to ask patients and caregivers about their perspectives.

In January 2017, we prepared a politically-neutral survey to gather input from dysautonomia patients and caregivers around the US on their feelings and experiences related to insurance coverage and the Affordable Care Act. The survey was brief so that we could analyze the data quickly, and it certainly doesn’t capture the full scope of this very complex issue.  We present a summary of the results below so readers can make up their own minds.

Whatever your perspective, we encourage dysautonomia patients and families to use this information and contact their federal representatives to have their voices heard. You can find contact info for your federal representatives on our Elected Officials Look Up tool. You may be one voice in a sea of many, but Congressional offices keep track of how many constituents contact them on each issue, and what positions you share.  Calling and emailing your Congressional members are the most effective way to communicate. Postal mail may take weeks to arrive because it goes through intense security scrutiny before being delivered to Congress. Requesting a meeting with the local office of your elected officials may help too. Ask to meet with the office staffer who is most directly involved with health policy matters.

Dysautonomia International has been the voice of the dysautonomia community on Capitol Hill since our first Dysautonomia Lobby Day in 2013, bringing hundreds of families to Capitol Hill to meet with their House and Senate members.  We’ve engaged Congress and federal agencies on issues ranging from increased research funding for autonomic disorders, to the approval of drugs that help dysautonomia patients, to providing insurance coverage for autonomic testing. You can read our other federal policy and advocacy positions here.

Survey Title:  The Affordable Care Act & Insurance Coverage in the Dysautonomia Community

Survey Design: Politically-neutral questions regarding insurance matters were asked using Survey Monkey, a web based survey data collection tool. The survey was distributed through Dysautonomia International’s email list, social media channels, and patient support groups. Survey participants were instructed that the survey was meant for US citizens and residents. There were no age or other limitations on survey participation. Within the first 48 hours after its release, 339 individuals participated in the survey, and their answers form the basis for this summary. Participants were not required to provide their name or other personally identifiable information, although the final question of the survey permitted them to do so if they wanted to. Basic statistical analysis was performed in Microsoft Excel.

Summary of Survey Results:
US Citizenship or Residency
Of the 339 participants, 337 responded affirmatively that they were US resident or citizen and 2 individuals did not answer the question.

Relationship to Dysautonomia
62% of respondents were dysautonomia patients, 29% were caregivers for a dysautonomia patients, 8% were both a dysautonomia patient and caregiver, and one individual reported “none of the above.”

Access to Insurance
98% of respondents had insurance at the time of the survey.

Source of Insurance
Insurance was provided by the following sources. Respondents were allowed to chose more than one option, since some people have insurance from multiple sources.
Spouse’s Employer: 31.70%
Respondent’s Employer: 20.26%
Self-Funded: 17.97%
Parent’s Employer: 12.42%
Federal Government: 11.76%
State Government: 11.73%
Union: 0.65%
Local Government: 0.33%
Other: 7.84% (“other” answers included university sponsored insurance, COBRA, living overseas with travel insurance, etc.)

Since our patient community includes adolescent and college-aged students, we asked whether respondents were on their own insurance plan or a parent’s plan. 81% of respondents were on their own plan and 19% were on a parent’s plan.

Household Income
Respondents report an average household income of $86,990. The median household income in the US was $55,775 in 2015.

This finding is consistent with prior studies identifying higher than average median household income in POTS families. This may reflect the difficulty in getting diagnosed with POTS. Individuals from lower income families may have a harder time obtaining a diagnosis, as the average POTS patients sees 7 doctors before being diagnosed with POTS, and 25% of POTS patients see more than 10 doctors before being diagnosed with POTS. Lower income individuals may not have the financial means to see 7-10 doctors or more, and may thus remain undiagnosed.

Monthly Health Insurance Premiums
Respondents contribute an average of $447 per month towards their health insurance premium.

Opinion on the Affordable Care Act
25% of respondents thought that the Affordable Care Act should be kept as is, 56% felt that it should be amended to change certain parts, and 19% felt that it should be repealed entirely.

Pre-Existing Health Condition Denials of Coverage
23% of respondents had been denied insurance coverage due to a pre-existing health condition prior to the adoption of the Affordable Care Act, which prohibits insurers from denying coverage based on pre-existing conditions.

Affordability of Health Insurance Coverage
22% of respondents were unable to afford health insurance prior to the adoption of the Affordable Care Act.

28% of respondents said the Affordable Care Act allowed them to purchase health insurance for themselves or a dependent that they would not have been able to afford otherwise.

Impact of the Affordable Care Act on Dysautonomia Patients and Their Immediate Families
45% of respondents felt that the Affordable Care Act benefitted them personally, 16% felt it didn’t impact them at all, 25% felt that it harmed them and 15% weren’t sure. The reasons given varied widely, from allowing a respondent or respondent’s family to have insurance for the first time, to concerns about higher co-pays. One of the most frequent benefits reported was the ability of young people with POTS to stay on their parent’s plan until age 26. One of the most frequent complaints reported was increased health care costs.

40% of respondents felt that the Affordable Care Act benefitted members of their immediate family, 20% felt that it didn’t impact members of their immediate family, 24% reported that it harmed members of their immediate family, and 16% weren’t sure. Reasons given varied widely, but were similar to the reasons given in the prior question.  Many individuals felt that it benefitted their family members by providing health insurance for the first time or allowing children to stay on a parent’s plan until age 26, while many others expressed concern about higher overall health care costs.

Anticipated Impact of Repeal
52% of respondents felt that repeal of the Affordable Care Act would impact them negatively, 8% felt that it wouldn’t impact them at all, 13% felt that it would impact them positively, and 27% weren’t sure.

Political Leanings
42% of respondents tend to identify politically as Democrat, 27% report no party affiliation, 20% tend to identify as Republican, 7% prefer not to say, and 6% tend to identify with a third party.

The overall picture is complex, with a diversity of experiences and perspectives within our patient community. The data suggests that the Affordable Care Act has benefited more dysautonomia patients and their families than it has harmed. A majority of individuals who responded to this survey felt that a repeal of the Affordable Care Act would impact them negatively (52%), and an even larger majority felt that it should remain as is or be amended (25% and 56%, respectively). The most common concern raised by those who felt they did not benefit from or did not favor the Affordable Care Act was increased health care costs.

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