What do PatientsLikeMe members think about the Affordable Care Act?

With a new administration in Washington, the future of “Obamacare” is uncertain. So we wanted to know: What do patients think about potential changes to the Affordable Care Act (ACA)? More than 2,000 PatientsLikeMe members recently shared their thoughts in the largest patient poll on the 2010 health care law.

Previous large-scale polls about the ACA focused on the general population, rather than specifically asking people with health conditions to weigh in. But in this poll, we heard directly from 2,197 members living with a variety of conditions, including MS, fibromyalgia, Parkinson’s, depression, ALS, diabetes and cancer.

“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.”

‑ Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety

Overall, PatientsLikeMe members have similar feelings and concerns about the ACA as the general population. But patients – who have regular, real-world health care experiences – see some benefits that the general population might have overlooked. Take a look at these snapshots of some key findings from the poll (tap each graphic for a larger view).

No go on repeal

Those who took the PatientsLikeMe poll* were more likely to oppose a repeal of the ACA than the general population**.

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What should be scrapped?

When asked which one component of the ACA they would eliminate, if they were forced to choose, patients were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.

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How helpful is the ACA?

More than 37 percent of patients said the ACA has been “very helpful” for people with chronic conditions, while nearly 20 percent said “somewhat helpful.” Also, nearly half of patients (46%) said the ACA needs only minor modifications.

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Strong opinions stand out

People living with major depressive disorder (MDD) as their primary condition were more likely to oppose a repeal of the ACA. The MDD community may have a stronger stance on recent health care policy because of a 2013 rule requiring insurers to cover mental health and addiction issues equally to physical health ailments.

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Money talks

Lowering costs is a priority for both patients and the general population. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. And lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.

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“I think the problems with this health care program affect those individuals who are caught in the cracks … who do not make enough but do not make so little that they are covered by government programs,” said member Randy, who took the poll. “But we had these problems before the Affordable Care Act. So we need to fix [it], not take [it] away completely.”

What do you think about the ACA? Do you have a different take? Jump into the forum and keep the comments coming. Your voice – the real-world patient voice – matters.


* See the full report on the PatientsLikeMe poll.

** General population results came from a 2016 Kaiser Health Tracking Poll.

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20 thoughts on “What do PatientsLikeMe members think about the Affordable Care Act?”

  1. The ACA I believe should be scrapped. Yes there are healthcare needs which could be addressed in a voucher system that each legal resident could shop and spend their yearly healthcare $ at whatever provider they choose. Their own Dr. and get the best prices on tests and or medical equipment and healthcare decisions !

  2. I think it should be edited, many can’t get it because the make to much or little to get it. Patient should have the option to choose who they want in their healthcare and decisions. I lost my PCP because of this ACA and many other do not accept this. It need a over haul. They need to go to the people who have a existing condition and start there, not the government. They need the government to be lopped off. Those in the government can afford health insurance, and don’t need ACA.

  3. Kensyl E Burns

    I believe that it should be scrapped or at least most of it, we need to have insurance providers that can compete with one another to get the prices down. Gov’t needs to get out of the healthcare business.. Drs and insurance providers need to work better with one another. We don’t need committees such as those with Medicare and Medicaid that dictate how the dr can treat their patient. It’s insane when a fatcat bureaucrat dictates to a highly trained medical professional on how to treat their patients. The only place gov’t should be in health care is to regulate that the insurance companies can not refuse a patient due to previous medical conditions. But the patient/doctor should decide on the treatment, not insurance companies by the way they refuse to cover treatments that are simple and logically to the doctor and patient. I’ve had too many MRI’s and Cat Scans refused by my insurance as well as meds not covered. Gov’t should stop interfering in also in the way they have over the last five years with legislation to prevent drug abuse that actually binds the hands of the doctors to properly their patients, such as with the prescription narcotic medication legislation that many states have adopted!

  4. Terri Justick

    The Affordable Care Act has to go. I suffer with Myasthenia Gravis and have to be insured. My insurance has increased by $400 a month each year for the last 3 years. Our payments are $2200 a month…..that’s just my husband and I. This is like being held hostage.

  5. I am against the Affordable Care Act. It is draining so many people dry. It’s expensive and does not take care of all. My Mother’s Policy United Healthcare is the worst policy I have ever seen. I have worked in the Medical Field since 1988 and I have never seen such poor Policies that takes everything one makes in money to pay the premium. Then it will not pay on Medical Claims. Our Insurance Commissioner in NC will not force them to follow the State and Federal Laws. My Mother had 3 Major Back Surgeries from Oct 6th through Nov 18th, 2016. Had she not had these surgeries her quality of life would be little to none. United Healthcare admitts the Surgeries were Emgergent. However, even though her bones were falling apart on their own. She was at the point she could not walk due to her bones shattering. Yet, still they wanted her to be on bed rest for the full 15 business days it takes to get Approval for surgery. She already lost her actual butt bone from left to right. No repairing it or fixing it. My Mother has no butt bone. Its gone! We are now at 2nd level of appeal and this panel is beside themselves trying to figure out why these claims were not pain in the first place and why they are being allowed to not follow the NC Law and Federal Law to paying claims. In an Emgergent care situation the Insurance Policy has to go by the Law not its policy plan. In this situation the Federal and State Law Super cides the Policy plan. Looks like I am going to be hiring an Attorney as well as 7 other people with this same problem to get these claims paid. When the Insurance companies are not forced to follow the law… What good is paying premiums. None. You are getting emergency treatment and you are having to worry about how you will get the money to pay these bills that should have been paid by the Insurance company. This causes extreme health problems too. The affordable care act is not for the people. It is to line the pockets of Polictians, Government and Insurance companies! While people are made to lay there and die. We need help in getting these policies to help the ones paying these premiums.

  6. We were told when this Policy was purchased that it was not a HMO plan. She would be able to go to any Doctor for Medical care. Lies… Lies… We asked and we were straight up lied to. Most of the surgerons in our area is not covered under this affordable care act plain. Being I have worked in the Insurance in a Hospital Setting for over 15 years. I did know the questions to ask. And each time I asked is this a HMO policy United Healthcare lied and said no. I even asked. Will this keep her from seeing any doctors or any area in the Medical field? Will she have to get Gap Authrizations. I was told no. As long as premium was paid, she would not have any problems seeing any Doctor, PA or NP she chooses or has to go to. I was told no in network or out of network issues in this policy. Lies. Lies…

  7. After paying my premiums I can’t afford to pay for the co-pays on visits and medications. I have cancer and radiation sickness. (bipolar disorder, terrible effects from radiation poisoning) sigh

  8. I’m one of the patients that is in the middle of aca. I make it think $24.00 to much a month to get any help from the state of Michigan. I’m on Medicare, but tried to get on Medicaid program here. They said the laws change ever year with the ACA. Mean while the bills just keep piling up.

  9. Susan Pacey-Field

    I am one of those who would likely lose my coverage if the ACA gets repealed. I have expanded medicaid because my husband makes too much. He has social security and a pension, when totaled puts us just over the line for general medicaid. Yes, the ACA needs some repair, but please don’t repeal it. There are real people with chronic issues, like myself who will lose out if the act were repealed.

  10. I feel the affordable care act is not affordable or desirable anymore. What should have happened before government got a hold of health care is mandate insurance companies do not discriminate against pre existing conditions and implement torte reform. We had the best health care in the world. It needed some tweaking to spin down costs not take it away which is what Obama care did. It’s worse than Medicaid.

  11. I think it was too soon to try to pass a bill replacing ACA. It needs to be a measured, careful, well-thought-out plan that is an improvement on the present arrangement — an improvement in the way of costs, quality of care, minimal government intrusion into healthcare decisions, profitability for insurance providers . . . the whole nine yards. Don’t rush this thing! Do it right!

  12. I am not a fan of the ACA and while repeal and replace sounds good, do not throw away good provisions like pre-existing coverage. Our government seems to forget that competition almost always lowers cost, so why not open the state lines for insurers to cross? Set a percentage of profit that a company can make and also a percentage of high risk patients each company must cover. For areas of the country that have smaller populations and areas with depressed economic conditions, require insurance companies to provide services across all demographics. Many areas of the country are now finding that the ACA doesn’t provide choices of insurance suppliers as companies have pulled out of areas that may cost them profit. When there is only one or two insurers in an area, they can charge as much as they want, and our hands are bound by the mandate to purchase from them.

  13. Once ACA started, my employer insurance premiums went up while coverage went down. As for covering pre-existing conditions, can you get fire insurance when your house is already on fire? ACA has to go. Let the free market determine cost and coverage. FREE-MARKET, not the government deciding anything. No subsidies. Watch drug costs drop. Too much to go into here.

  14. I don’t understand the outcome percentages. All the comments are against Obama Care.
    I was held hostage for 2 1/2 years. I had put in for SSD….. Soc. Sec. said that I had gotten it(while I was hostage) and didn’t use it for 6 months so they take it away. Of course I didn’t know I had gotten it. They said I had to start all over again.
    I am too ill to work and have been for years. So I finally get rescued. I sign up for Healthcare. So evidently while I was hostage Obama changed a lot I needed covered. What happened to care for pre=existing conditions.?????? They won’t even cover a dental deep cleaning. I can’t help it I couldn’t go to the dentist for those 2 1/2 years.
    I am next to homeless… no income. really?

  15. Kathleen Cappola

    There is only one answer to this problem Medicare for all plain and simple end of story. Health care companies really don’t want to compete that’s all a lie so you fall for their nonsense. It wouldn’t make a bit of difference the AHC saved my daughters life and that’s a fact

  16. Cigna was forcing me to go back to work or apply for Disability. I couldn’t go on disability because you can’t get the insurance until you are on it for 2 years. Obamacare would have cost me 1300.00 a month for 80/20. I had to go back to work. Make this Insurance affordable for everyone

  17. Rachel Doherty

    I did not participate in the survey, I work in public health policy and advocacy and there are many things that people do not understand. The ACA passed “As-Is” after it was stripped down while going back and forth between the houses for negotiation so no. it was not perfect by any means. It did however, do the job that it intended to do during the phased in implementations such as requiring insurance companies to pay for preventative services and stopping the common practice of refusing to cover patients due to pr-existing conditions or kicking them off when they reached the limitations when they had diseases such as cancer. Personally, as a Registered Dental Hygienist my 3 offices did not offer benefits. They hire part time only to intentionally avoid it. I was denied coverage completely through the private market and I paid a 50% premium increase for my children due to pre-existing conditions (PTSD and GERD for all 3 of us and a gallstones for me). In October of 2010 children could no longer be penalized for having these issues so my payments decreased by nearly $400! By the time I finally got coverage (I had to take a terrible job for a shady corporate practice to obtain insurance in 2011) I paid $12,000 out of pocket to have my gallbladder removed and the surgeon never saw anything like it in his 28 years of practice. I was jaundiced, had pancreatitis, and permanent liver damage from waiting for so long. I have other personal stories that are both positive and negative however, overall, I could have died from lack of insurance! On a professional note, one of the last phases was to automatically enroll children into a dental plan and then offer dental coverage to adults. Unfortunately most dental plans are terrible no matter what. Additionally, though the ACA attempted to limit corruption among the insurance companies, lobbyists found loopholes that they made sure to get into the bill. They are the primary reason for the failures and the states that refused to adopt the exchanges and did/do not comply with the tenants of the act, are also responsible for the adverse effects. I think if the public and patients knew the truth and were able to see behind the scenes this survey would have demonstrated completely different outcomes. Single payer is the only way to shut these greedy insurance companies down! It is horrific how much money they accumulate while blood is on their hands. The hospitals and providers have a variety of struggles and flaws. Our health care system has been pitiful for decades! We took 10 steps forward and are about to slide a thousand plus steps back.

  18. Teresa Mikrut

    Without the ACA, if I lose my employer sponsored insurance, I will likely be unable to purchase insurance under the new plan. If there are any companies willing to insure me, the cost would be so high that I would never be able to pay for it. I have several serious pre-existing conditions, including cancer. If I could pay for it, the insurance companies, under the new plan, will be able to decide what they will cover and what they won’t. Anyone who thinks health care and insurance suddenly became a problem in the last decade is either young or hasn’t been paying attention. It’s been a growing problem for decades. And whether we realize it or not, we all subsidize people who can’t afford insurance one way or another. If we don’t subsidize their premiums, we pay for them to use the emergency room–the most expensive method of obtaining medical care. It sure seems that the current government is very good at convincing us that it is our fellow citizens that are causing us all problems. That tactic conveniently keeps us from questioning what the real problems are. Any way, I hope I can continue to work and keep my insurance until I die because it certainly looks like the alternatives are untenable.

  19. The ACA has improved the medical system but much more needs to be done. Pre-existing conditions should not prevent a person from getting affordable coverage, for example. But the way insurance works is that most people pay in, in any given year, while some receive it. If only sick people get insurance, then no one is likely to get adequate coverage. So there should be an individual mandate.
    If you compare car insurance, the situation is similar. Everyone who drives a car has to have insurance. Nobody gets to opt out of getting it. Here too insurance companies charge higher premiums for people who have had accidents. This happens regardless of who hit whom, you know. If I’m rear ended by someone who was busy texting, my car has to be fixed or replaced so I will file an insurance claim. The insurance pays me but then greatly increases my premium for several years, in effect punishing me for having been hit. This is not a fair system; it is the result of our economic system where everything is a commodity to be bought and sold.
    But we can choose to limit capitalism and declare health and ultimately life to be God given endowments and not commodities. This is what I think should be done. The Medicare and Medicaid systems are not perfect but both are a good deal better than relying on private insurers to do what is fair and right. So why not expand the governmentally run systems to cover everyone?

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