Largest Patient Poll on ACA Shows Patients Value Health Care Law More Than the General Population, Are Less Inclined to Want a Repeal

Lowering Costs, Coverage for Pre-existing Conditions Remain Top Priorities; If Changes Are Required, Individual Mandate Should Go

CAMBRIDGE, Mass.--()--As Congress and the White House continue to discuss potential changes to the Affordable Care Act (ACA), PatientsLikeMe revealed results from the first large-scale poll to assess patient priorities for the health care law. The poll’s 2,197 respondents are among the estimated 133 million Americans living with chronic conditions.

Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety, said the poll gives voice to those who may be most heavily impacted by changes to the law. “Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.”

Key findings from the poll show that overall, patients have the same concerns as the general population about health care costs, but see benefits in the law that the healthy may have overlooked:

  • More than half (57%) believe the ACA has been helpful to people living with chronic conditions.
  • Nearly half (46%) feel the ACA needs only minor modifications to improve it.
  • Over the last year, their out-of-pocket expenses for health care have either stayed the same (47%) or increased (43%).
  • Lowering costs is a priority for both patients in the PatientsLikeMe poll and for the general population, which took part in a December 2016 Kaiser Health Tracking Poll. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. Lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.
  • Nearly half (46%) of PatientsLikeMe poll respondents felt that a repeal of the 2010 ACA “should not be done,” while one third (31%) of the Kaiser general population felt it “should not be done.”
  • When asked which one component of the ACA they would eliminate if they were forced to choose, PatientsLikeMe respondents were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.
  • When asked which one component of the ACA they would keep if they were forced to choose, PatientsLikeMe respondents were six times more likely to say they would keep mandatory coverage for pre-existing conditions vs. other components of the ACA.
  • The widest differences in opinion related to questions about a repeal of and government involvement in health care law, and were found between the general population, non-condition specific patients, and those who reported major depressive disorder (MDD) as their primary condition:

    • Of those living with MDD, 59% said that the health care law should not be repealed, vs. 45% of the overall PatientsLikeMe respondents and 31% of the Kaiser general population.
    • 42% of respondents living with MDD said decreasing federal government spending on health care should not be done, vs. 29% of the overall patient population and 18% of the Kaiser general population.
    • As for reducing the federal government’s role in health care, 37% of patients living with MDD said it should not be done, compared to 28% of the overall patient population and 20% of the Kaiser general population.

Okun said that patients living with MDD may have a stronger opinion about healthcare law given the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA), a law passed by Congress in 2008 and codified into rules in 2013 to ensure equal treatment coverage for mental illness and addiction. According to the National Alliance on Mental Illness (NAMI), before the law, “mental health treatment was typically covered at far lower levels in health insurance policies than physical illness.”

Full survey results and graphics are available at http://news.patientslikeme.com.

PatientsLikeMe Poll Methodology

Between January 23-27, 2017, PatientsLikeMe fielded a 19-question poll to a sample of its members in the United States who are living with chronic or progressive degenerative conditions. A total of 2,197 patients completed the poll, which asked both original questions and questions from a December 2016 Kaiser Health Tracking Poll to compare patient and general population responses.

Respondents had a range of chronic or progressive medical conditions and listed their primary condition as multiple sclerosis (13%), fibromyalgia (12%), Parkinson’s disease (6%), major depressive disorder (5%), ALS (5%), type 2 diabetes (3%) and multiple myeloma (3%), among many other conditions. The mean age of respondents was 54.5 years (the range was 18- >89). Of 1,840 respondents who gave information on level of education (83.8% of total), 1.0% had less than a high school diploma, 11.0% had high school diplomas, 38.3% had some college, 27.7% reported a college degree, and 22% reported post-graduate education. About one-third (36%) of patients had health insurance through their employer, one-third (35%) had Medicare; and the rest had a mix of other health care coverage including Medicaid, VA, military, and direct pay insurance, which includes insurance purchased from ACA exchange programs. A very small percentage (2.5%) of respondents said they had no health insurance. Nearly all respondents (95%) are registered voters. Their party affiliation is as follows: 37% say they are Democrats, 19% are Republicans; 15% are Independent; 13% preferred not to say; 11% are unaffiliated and 4% are Libertarian.

About PatientsLikeMe

PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With 500,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

PatientsLikeMe Poll Questions and Responses (18 multiple choice; 1 open ended)

As you answer the next few questions, reflect back on 2016 and let us know how your experiences changed.

The quality of my health care … (n=2197)

Improved       336 (15.3%)
Stayed the same 1404 (63.9%)
Got worse 457 (20.8%)

My out-of-pocket health care costs … (n=2197)

Decreased       220 (10.0%)
Stayed the same 1034 (47.1%)
Increased 943 (42.9%)

My health itself … (n=2197)

Improved         289 (13.2%)
Stayed the same 1032 (47.0%)
Got worse 876 (40.0%)

How much of a priority for you is lowering the amount individuals pay for health care? (n=2197)

Top priority       1184 (54.0%)
Important but not a top priority 869 (40.0%)
Not too important 112 (5.1%)
Should not be done 32 (1.5%)

How much of a priority for you is lowering the cost of prescription drugs? (n=2197)

Top priority       1440 (65.5%)
Important but not a top priority 676 (30.8%)
Not too important 68 (3.1%)
Should not be done 13 (0.6%)

How much of a priority for you is dealing with the prescription painkiller addiction epidemic? (n=2197)

Top priority       573 (26.1%)
Important but not a top priority 1086 (49.4%)
Not too important 473 (21.5%)
Should not be done 65 (3.0%)

How much of a priority for you is repealing the 2010 health care law (called the Affordable Care Act, or ACA, or Obamacare)? (n=2197)

Top priority       570 (25.9%)
Important but not a top priority 401 (18.3%)
Not too important 217 (9.9%)
Should not be done 1009 (45.9%)

How much of a priority for you is decreasing how much the federal government spends on health care over time? (n=2197)

Top priority       410 (18.7%)
Important but not a top priority 800 (36.4%)
Not too important 337 (15.3%)
Should not be done 650 (29.6%)

How much of a priority for you is decreasing the role of the federal government in health care? (n=2197)

Top priority       531 (24.2%)
Important but not a top priority 669 (30.5%)
Not too important 341 (15.5%)
Should not be done 656 (29.9%)

How do you think a complete repeal of the Affordable Care Act (also called ACA, or Obamacare) might affect you?

Positively       285 (13.0%)
Negatively 845 (38.5%)
I don’t know 620 (28.2%)
I don’t expect changes to affect me 447 (20.3%)

When it comes to your opinion about the health care law (the Affordable Care Act, also called ACA, or Obamacare), do you feel that it (choose the one statement you agree with the most)… (n=2197)

Is working well the way it is       138 (6.3%)
Needs minor modifications to 1003 (45.7%)
improve it

Needs a major overhaul

621 (28.3%)

Should be totally eliminated 285 (13.0%)
Other 36 (1.6%)
Not sure 114 (5.2%)

Have you or your family been helped by any part of the health care law (the Affordable Care Act, also called ACA, or Obamacare) that was passed by Congress and signed into law in 2010? (n=2197)

Yes       911 (41.5%)
No 785 (35.7%)
The health care law has hurt me 277 (12.6%)
or a member of my family
Not sure 224 (10.2%)

If you were forced to choose, which ONE of the following would you want lawmakers to eliminate from the Affordable Care Act (ACA or Obamacare)? (n=2197)

The “individual mandate” which requires       1007 (45.8%)
most non-exempt Americans to maintain
minimum essential coverage, or pay a fee
on their year-end taxes if they go
without coverage
 

The “employer mandate” requiring that

253 (11.5%)

all businesses with 50 or more full-time

 

equivalent employees (FTEs) provide
health insurance to at least 95% of their
full-time employees and dependents up
to age 26, or pay a fee
 
Subsidies for small businesses to help 138 (6.3%)
them cover the costs of providing health
insurance coverage to employees
 
Mandatory coverage for pre-existing 188 (8.6%)
conditions
No annual coverage limits 152 (6.9%)
 
Medicaid expansion for low-income 120 (5.5%)
Americans
 
Cost assistance for people who make 147 (6.7%)
$46,000 or less (individuals) or $93,500
or less (families)
 
Essential health benefits and preventative 192 (8.7%)
services at no out-of-pocket costs

If you were forced to choose, which ONE of the following would you want lawmakers to keep in the Affordable Care Act (ACA or Obamacare)? (n=2197)

The “individual mandate” which requires       148 (6.7%)
most non-exempt Americans to maintain
minimum essential coverage, or pay a fee
on their year-end taxes if they go
without coverage
 
The “employer mandate” requiring that 128 (5.8%)
all businesses with 50 or more full-time
equivalent employees (FTEs) provide
health insurance to at least 95% of their
full-time employees and dependents up
to age 26, or pay a fee
 
Subsidies for small businesses to help 126 (5.7%)
them cover the costs of providing health
insurance coverage to employees
 
Mandatory coverage for pre-existing 1202 (54.7%)
Conditions
 
No annual coverage limits 99 (4.5%)
 
Medicaid expansion for low-income 175 (8.0%)
Americans
 
Cost assistance for people who make 139 (6.3%)
$46,000 or less (individuals) or $93,500
or less (families)
 
Essential health benefits and preventative 180 (8.2%)
services at no out-of-pocket costs

How successful do you think the Affordable Care Act (or ACA, or Obamacare) has been in helping people who are living with chronic conditions? (n=2197)

Very helpful       820 (37.3%)
Somewhat helpful 425 (19.3%)
Not sure 581 (26.4%)
Not helpful 196 (8.9%)
Not at all helpful 175 (8.0%)

Can you share more about your experience? (open ended; responses collected)

What type of health insurance do you have? (n=2197)

Private (through employer or union)       791 (36.0%)
Private (individual plan) 168 (7.6%)
Medicare 759 (34.5%)
Medicaid/other low-income 255 (11.6%)
government plan
Veteran's Administration 78 (3.6%)
TRICARE/other military health 44 (2.0%)
insurance
Indian Health Service 3 (0.1%)
Other type of insurance 45 (2.0%)
No Insurance 54 (2.5%)

Are you currently registered to vote? (n=2197)

Registered       2096 (95.4%)
Not registered 86 (3.9%)
Not sure 15 (0.7%)

What is your party affiliation? (n=2197)

Democrat       812 (37.0%)
Green Party 15 (0.7%)
Independent 337 (15.3%)
Libertarian 93 (4.2%)
Republican 419 (19.0%)
Unaffiliated 232 (10.6%)
I prefer not to say 289 (13.2%)

Contacts

PatientsLikeMe
Katherine Bragg, +1-617-548-1375
kbragg@patientslikeme.com

Contacts

PatientsLikeMe
Katherine Bragg, +1-617-548-1375
kbragg@patientslikeme.com