Where the Road to Health Reform Began

About a year ago, those of us working on the Presidential Transition were taking the first steps on the road towards reforming our health care system under the Obama Administration. We knew that this wasn’t an academic issue or an issue just for the political scoreboards – we had to hear from the American people first on exactly what problems they were facing, and what they wanted to see changed.

And so in December 2008, we invited Americans across the country to host and participate in Health Care Community Discussions to talk about the problems they faced with the health care system and proposed solutions. Over 9,000 Americans in all 50 states and the District of Columbia signed up during the holiday season to host a Health Care Community Discussion, coming from every walk of life – patients, doctors, nurses, religious leaders, first responders, and small business owners. Robert from Indiana explained, “Our neighbors include a broad and diverse cross-section of America. Within a few miles we have steel mills, inner cities, suburbs, and farms...Our event will demonstrate…the level of understanding among Americans regarding the need for access [to health care] by all Americans, and ideas for achieving that goal.” Elizabeth from South Carolina noted that her discussion would “show everyone that even the true middle class is really struggling with this issue.” Across the country, over 30,000 friends, family, neighbors, and co-workers gathered in homes, offices, coffee shops, fire houses, universities, and community centers to discuss reforming our health care system.  

After each Health Care Community Discussion, hosts were asked to submit the results of a Participant Survey as well as a report that summarized the group’s main concerns and suggestions. The health reform team and a group of dedicated volunteers read and analyzed 3,276 group reports, a process that was as rewarding and illuminating as it was time-consuming. When we held the White House Forum on Health Reform in March of this year, launching our push from the White House in earnest, President Obama received a final report on the Discussions: “Americans Speak on Health Reform: Report on Health Care Community Discussions.” 

And now, as we move into the final stretch of this road towards the historic passage of health insurance reform, we wanted to take a look at how the legislation we’ve seen emerge from Congress addresses many of the concerns, questions, suggestions, and solutions we heard about a year ago. 

Lacking Insurance Security
  • From Tampa, Florida: “If a person loses their job, they are penalized twice: first, in losing their job and then by losing their health insurance.”
  • From Wallingford, Connecticut: “Portability of health insurance should be a main goal because people change jobs often. The new health care system should allow people to access health care regardless of whether they are working.”

Health Insurance Reform Solution: Reform will ensure that Americans always have guaranteed choices of quality, affordable health insurance whether you lose your job, switch jobs, move, or get sick. With the new health insurance exchange, Americans can easily compare insurance plans, prices, and performance to decide which quality affordable insurance option is the right one.

Problems with Insurance Companies
  • From Portland, Oregon: “We also felt strongly that the health care system in its current state is clearly NOT FOR US. It is not designed to benefit or help us. Who is it for? Who does it benefit? We suspect that the answer is big corporations, because none of us know any individuals who feel that the health care system really meets their needs. It’s bureaucratic, disempowering, overwhelming, confusing, and frustrating in more ways than we can list.”
  • From Pittsburgh, Pennsylvania: “The consensus was that the source of these problems is that health care is a for-profit system in which decisions about the type and amount of care are made mostly by insurance companies rather than by patients and care-givers.”
  • From Chicago, Illinois: “The majority felt that the current health insurance system is too cumbersome with far too much money being spent on advertising, marketing, profits and administrative costs related to having to conform to non-standardized regulations, billing practices, and forms imposed by having to deal with such a large number of different insurance companies.”

Health Insurance Reform Solution: Reform will end insurer abuses, lower premiums, and hold insurance companies accountable. Insurance market reforms will prohibit abuses such as denying coverage for pre-existing conditions; charging exorbitant premiums based on gender, age, or health status; dropping coverage when people are sick; and imposing annual or lifetime limits on benefits.  Insurers will be held accountable for excessive overhead costs fueled by unreasonable executive compensation and profits. And consumer rights will be enhanced by requiring all insurers to provide effective appeals procedures including outside, independent review of appeals. Read more about reform will help consumers here.  

Denied Coverage because of a Pre-Existing Condition
  • From Wisconsin Dells, Wisconsin: “My mother is epileptic; she has been all of her life. This is not a choice she made, this is a condition...but because of her condition she is denied coverage. It’s not that she is just not covered for her epilepsy issues, she is denied for all her health concerns, prevention included.” 
  • From Missoula, Montana: “No mother should have to say her daughter is ‘uninsurable.’ We provide education to all children but not health care? It just doesn’t make sense to me.”
  • From West Lafayette, Indiana: A couple described their son who survived Hodgkin’s Lymphoma at age 17. Now an adult, he “has trouble finding a job with insurance benefits, because of his previous disease, even though he has successfully recovered.”
  • From North Brunswick, New Jersey: “People who have the pre-existing conditions are the ones who need the insurance the most yet most of their time is spent fighting with the insurance company on what is covered and what is not covered.” 

Health Insurance Reform Solution:   Insurance companies will no longer be able to deny or water down coverage because of a pre-existing condition. Affordable insurance coverage options will also be made immediately available through a high-risk pool for Americans who are uninsured and have a pre-existing condition.  In the Senate bill, insurers will be prohibited from denying coverage to kids with pre-existing conditions six months after enactment. Read more about how reform will provide stability and security for all Americans here

Charged More Because of Illness 
  • From San Antonio, Texas: “I work very hard but there is no way I can buy insurance for my family. My wife has severe rheumatoid arthritis and has had to many times go without treatments because I cannot pay for health insurance. She is too sick to be able to work. With her so sick, it makes it very expensive to buy any health insurance. What is a working man supposed to do?"

Health Insurance Reform Solution: Reform will end insurance discrimination that charges individuals more if they currently face or previously had any illness.

Overwhelmed by Out-of-Pocket Expenses
  • From Greeley, Colorado:   “One thing I want to make very clear is that I have good insurance and still the bills are out of control. I am one of the lucky people because I had $40,000 in savings when this cancer started.” 
  • From Madison, Wisconsin: “The middle class, however, often has insufficient coverage, high deductibles, high co-pays, and/or limited catastrophic coverage, leading to years of harassment by collection agencies and, in many cases, personal bankruptcy.”

Health Insurance Reform Solution:   Reform will save families from financial ruin by placing a cap on what insurance companies can force individuals to pay in out-of-pocket expenses. As well, Americans will no longer face annual or lifetime benefit limits so that Americans can have the peace of mind that treatments they need will be provided.

Lacking Access to Health Care
  • From Kingston, Rhode Island: “The central health care issue of our time is access to affordable, high quality primary care.”
  • From Arlington, Texas: “If someone is sick, they should receive medical care, regardless of whether or not they can pay. If my daughter is in school and she’s sitting next to someone who is ill, but whose parents don’t have insurance so she’s not receiving the care she needs, then my daughter could contract her illness. I don’t want that. It’s not the kids’ fault. Everyone should be afforded health care.”
  • From Milwaukee, Wisconsin: “If one has no health insurance, one does not go until problems are so bad they require a trip to the ER, which could have been avoided. In Wisconsin, care cannot be refused at an ER. So people wait and go to the ER, which is more expensive a service in general.”
  • From Longmont, Colorado: A single mother with two teenage sons felt sick but continued working her two jobs to support her family. As described in the group report, “When [the mother] ended up in the emergency room, tests showed that her heart was so damaged by a virus that it only function[ed] at 30% of capacity….Her heart function is now only 25%.” In addition to the mother’s heart condition, her eldest son was diagnosed with bone cancer only when he was admitted to the emergency room after suffering from leg pain for “months.” Consequentially, as described in the group report, “A family that had been self sufficient is now destitute with two members suffering from life threatening illnesses which could have been alleviated with early health care.”

Health Insurance Reform Solution:Reform will give insurance coverage to over 30 million previously uninsured Americans and will provide refundable tax credits to make sure Americans can afford quality coverage. For those receiving this premium assistance, the Congressional Budget Office estimates that average premiums under reform will be significantly less than what they would have paid without reform. Read more about how health insurance reform will help make coverage more affordable for families here.

Caught by the "Donut Hole"

  • From Greensboro, North Carolina: A group of health care workers met in a dentist’s office, where they discussed the story of a 76 year-old patient who had to pay $900 every month just for one medication “during the donut hole period…along with other out-of-pocket costs for the patient’s other meds.”

Health Insurance Reform Solution: Reform will close the coverage gap, or “donut hole,” in the Medicare Prescription Drug Program, dramatically lowering the cost of drugs for millions of seniors. Read more about how health insurance reform will benefit seniors here

Expensive Early Retiree Premiums
  • From Yelm, Washington: “[She] retired early from a large company. The company provides a very good retiree health care plan with the company covering a significant percentage of the premium cost based on the retiree years of service. For the bills that [she] sees, the health care costs paid to providers have not increased in the past 2 years, but the premium costs have increased significantly…If the premium costs continue to increase at the current annual rate, it would eat up most of their retirement savings just to pay health insurance premiums before they qualify for Medicare. The rate of increase of insurance premiums is out of control and they feel powerless to correct the problem. If health care insurance premiums continue to increase at more than 50% per year, they are considering dropping the good retiree health care plan to become uninsured until they qualify for Medicare.”

Health Insurance Reform Solution: Employers and their retirees between 55 and 64 years of age will have lower premiums from new financial assistance to employer health plans that cover early retirees, bringing down premiums by as much as $1,200 per family per year for some plans. 

Small Business Burdens
  • From Houston, Texas: “My son-in-law and daughter currently live in Spain because that’s where he can run his own small business. He had a business here in Houston, with three employees, young men. He insured them and it was cheap. But then he wanted to have a child, and the cost of insurance went through the roof. He couldn’t afford it for himself, much less his three employees. So he moved to Spain, where they take it for granted that healthcare is a right. He took my two grandchildren with him. This shows how our system is hamstringing our business development. How can you go out on a limb and start a new business when health care is a noose around your neck?”
  • From Fort Wayne, Indiana:  “[They] had premiums jump from $385 per month for three employees to more than $2,800 in four years. They were forced to drop coverage and have lost two key employees because of it.”
  • From Ottawa County, Michigan: “I am the owner of a small IT company…and employ…3 people – all of which are single parents – and one of them is my son. The cost of employee health care is so great that I cannot afford to provide anything. Quotes obtained from the local companies who provide ‘deals’…are, in some cases, greater than the employees’ bi-weekly take home pay. Other quotes that are affordable don’t provide the coverage needed.”

Health Insurance Reform Solution: Small businesses pay three times the administrative costs of large businesses for health insurance. Health reform will create a health insurance exchange that will reduce administrative costs, enabling small businesses to easily and simply compare the prices, benefits, and performance of health plans. Reform will also provide tax credits to help small businesses provide health insurance for their employees, making health care significantly more affordable for small businesses and their workers. Read more about how health insurance reform will benefit small businesses here.

Struggling with Rising Health Care Costs
  • From Enid, Oklahoma: “I have worked hard all my life as a farmer and in the energy sector. I have spent my life’s savings on [health care] and now I am refused care at our local hospital because I cannot pay. I may have to file [for] bankruptcy due to this.”
  • From Fayetteville, North Carolina: “A single mother of two children remarked that her choice had become as basic as health insurance or food for her family.”
  • From St. Joseph, Missouri: “Most of us are getting our letters from our insurance companies saying our unaffordable health care premiums are going up – Happy New Year! It happens every January without fail.”
  • From New York City, New York: “We are middle-aged – [he] is in his 50s and I’m in my 40s so we are a long way off from Medicare!...Health insurance and Housing costs are now on par. Even worse: Our cost for coverage is just for two people (no kids) and does NOT include any kind of coverage for drugs. So if one of us gets into a situation with expensive drug treatment, it might very well take our life savings and our home.”
  • From La Jolla, California: “People who are uninsured pay a non-negotiated rate for health care services; this is often many times higher than the rate paid by insured patients. This situation presents an almost insurmountable burden for unemployed people with no coverage.” 

Health Insurance Reform Solution: There are numerous ways that reform will lower costs for Americans. Reform will create an “exchange” or marketplace for insurance competition that will lower administrative costs. The Congressional Budget Office estimates that such reforms will lower premiums of a comparable plan in the individual market by 7 to 10 percent – which means more money in the pockets of Americans, and the security of having high quality coverage. Reform will also lower health care costs by streamlining the health care system through reforms such as improving care coordination, reducing medical errors, and encouraging more efficient health plans. A recent Council of Economic Advisers report (pdf) estimates that these provisions could reduce the growth of health care costs by one percent, generating 320,000 jobs nationwide and raising median family income by $6,800 by 2030. And a recent Business Roundtable study found that with reform, health care costs could be reduced by as much as $3,000 per employee by 2019. Read more about how reform will lower health care costs and make health insurance more affordable in your state here.  

Concerns about Fragmentation in the Health Care System
  • From Gaithersburg, Maryland:  “Fragmentation and lack of continuity of care create opportunities for medical error and redundant diagnostic and treatment efforts and associated costs.” 

Health Insurance Reform Solution: Health insurance reform will invest in innovative models of care such as “patient-centered medical homes” and “accountable care organizations” that rely on teams of primary care doctors, specialists, and nurses working together to coordinate and monitor a patient’s care more effectively.  These models are intended to encourage health care providers to better coordinate a patient’s care, track prescriptions, avoid duplication of treatments or tests, and follow a patient’s health progress.  This will help improve quality of care, prevent medical complications, and reduce costs by keeping people healthier and out of the hospital, especially important for those with chronic medical conditions.

Concerns about Medical Malpractice
  • From Harrisburg, Pennsylvania: “We have more medical schools in PA, yet fewer doctors. Graduating doctors leave PA because it is not a friendly state to practice in.”
  • From Camano Island, Washington: A group noted that the “response to illness is sometimes more costly because the provider is concerned about a negligence lawsuit and either prescribes unnecessary treatment or orders excessive tests to avoid possible litigation in the future.”
  • From rural Kentucky: A group at a public library talked about “concerns that you are safer outside of the hospital than in it, unless you have an advocate who can make sure the proper care is being given to a loved one.”

Health Insurance Reform Solution: In September, President Obama issued a Presidential Memorandum directing the Secretary of HHS to move forward with an initiative to give states and health systems the opportunity to apply for medical liability demonstration grants that put patient safety first and work to reduce preventable injuries; foster better communication between doctors and their patients; ensure that patients are compensated in a fair and timely manner for medical injuries, while also reducing the incidence of frivolous lawsuits; and reduce liability premiums. To encourage states to develop alternatives to traditional malpractice litigation, the House bill includes a voluntary state incentive grants program and the Senate bill includes state demonstration grants.

Inadequate Emphasis on Prevention 
  • From Nashville, Tennessee: “The system does not seem to have prevention and health as a goal. It seems to be about something else entirely.”
  • From Rapid City, South Dakota: “There needs to be a new paradigm shift from disease care to prevention.”
  • From Chesapeake, Virginia: The group agreed it was “costly to pay out-of-pocket for preventive health screenings.”
  • From Augusta, Maine: A gathering of the Maine Medical Association expressed, “We have the best sick medicine care and not the best preventive care.”
  • From Kirksville, Missouri: “There simply is no more pragmatic way to deal with the escalating cost of health care than to shift emphasis from spectacular attempts to deal with very advanced disease to prevention of disease in the first place.”

Health Insurance Reform Solution: Reform will require insurance plans to provide free preventive services and will create a system that manages illness and disease instead of just treating it when it’s too late.

Primary Care Physician Shortages
  • From Bellingham, Washington: “We have a serious shortage of primary care providers – which includes physicians, nurse practitioners, and other qualified professionals.”
  • From San Francisco, California: “[We] need more GPs/PCPs [general practitioners / primary care providers], so that they’re not overworked and have more time to spend with patients.”

Health Insurance Reform Solution: Reform will increase funding for grants, scholarships and loan repayments for physicians, nurses, dentists, mental health providers, and others. Reform will also provide loan repayment programs to encourage more nurse faculty to address the educational bottleneck in nursing, support programs to increase diversity in our workforce, invest in better workforce analysis so we know where more resources and providers are necessary, and provide payment bonuses to primary care providers practicing in underserved areas.

So that’s a sampling of how what we heard at the beginning of this road compares to what we’re seeing now at the end. And of course, America actually started down this road decades ago, and President Obama is simply the latest to get on the path after so many Presidents before him were pushed off. But more than anything, what we heard from the American people through the Health Care Community Discussions and throughout this past year is a reminder of how much this all means in the lives of millions of people, and how the problems they face aren’t just talking points, sound bites, or political arguments. It’s good to be reminded of that again.

Jen Cannistra is with the White House Office of Health Reform

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