Fate of the Affordable Care Act

Like many others, I spent a lot of time this week trying to follow the U.S. Supreme Court news about the Affordable Care Act. Starting early in the week, the Court spent three days on the Affordable Care Act, listening to arguments from the White House Administration lawyers in favor of preserving the law and from lawyers arguing against the constitutionality of the law. The case made it all of the way to the Supreme Court because different states around the country filed complaints against the "Insurance Mandate" within the law. The mandate requires that everyone in the United States purchase insurance. Opponents of the law attacked the mandate, arguing that the mandate infringes upon individual liberty. According to opponents of the Affordable Care Act, no one should be told they have to buy health insurance. I wonder if these people are also against seat belt laws, and laws that require car owners to buy insurance.

The Court Justices spent a day or so focused on the mandate. Based upon news stories from journalists who tried to read between the lines of the questions, the Justices are skeptical of the mandate's constitutionality. After examining the question of constitutionality, the Justices then spent a good deal of time on the remainder of the law, exploring whether or not the entire law should be stricken with the insurance mandate or if pieces of the law could remain. Again, based upon media stories, many people seem to believe that when the Court publishes its ruling, in June, the entire law will be abolished.

For the dwarfism community, and for other people with disabilities, this is bad news. Passage of the Affordable Care Act in 2010 was a monumental occasion. For the first time ever, people with dwarfism, and other pre-existing conditions, were protected from insurance companies. Prior to the law, insurance companies could deny coverage simply based upon a person's dwarfism. The law makes it illegal for companies to deny coverage based upon dwarfism, or any other pre-existing condition.

The arguments people use to justify denying insurance to individuals have been kind of ridiculous, from Mike Hukabee who said no one would buy a lemon from a used car salesman, to a guy earlier this week on a show called "Chicago Tonight" who said insurance companies shouldn't have to provide insurance to some people just like a bank shouldn't have to provide a mortgage on a house that fails inspection. While I wouldn't want to be sold a lemon, the comparisons don't make sense. The point of health care is to provide health services. Everyone, whether or a dwarf or not, will need health care coverage at some point in their lives. Insurance companies don't want to take the risk of insuring someone who may be more vulnerable. But in terms of cost, it's more risky if a person doesn't have coverage. If a person doesn't have coverage, again whether that person is a dwarf or not, then when that person gets sick, emergency room costs and other crisis measures will end up costing society more money in the long run.

While following the Supreme Court this week, I learned that if the Insurance Mandate is repealed, but part of the Affordable Care Act is retained, the pre-existing conditions protections are not likely to survive. The lawyers for the administration, who are defending the law, told the Supreme Court Justices that if the mandate is struck down, the pre-existing conditions protections would no longer be affordable. So for people with dwarfism and other disabilities, if the entire law isn't preserved, we lose.

I am not sure what to do at this point. The Justices probably have made their decision. We just have to wait a few months before we learn what the decision is. While we wait, I am comforted by a quote from a recent issue of The Nation Magazine. The quote gets at the fact that the health care industry in this country isn't really about protecting people and ensuring that people have access to resources that support their health. Instead, like some many other things, it's about business and money. If it were about health and humanity, everybody would be on the same page, working to ensure that all of us had access to affordable, quality care. The Nation quote is, "The challengers (to the Affordable Care Act) maintain that the case is about fundamental liberty, specifically our freedom not to be compelled to purchase things we don't want. But that frame, while undoubtedly appealing to the radical libertarian strain of the Tea Party, is misleading. In fact, the only 'liberty' that would be protected by a victory for challengers is the freedom of insurance companies to discriminate against sick people, (The Nation, p. 5, March 26, 2012)

Repellent

The first order of business for the new U.S. House of Representatives appears to be a repeal of the health care legislation passed in early 2010. Though I've worked in media and communications for nearly 10 years, I don't claim to be a messaging genius. But I am consistently frustrated by what appears to be the overwhelming superiority of Republicans when it comes to messaging. Not just with health care, but with other issues as well, Republicans often strip an issue to a core idea that resonates with large numbers of people. With health care and other issues, President Obama has been criticized for a tendency to over explain a message. Once one explains something too much, the message is often lost. Health care in particular seems to be a perfect opportunity for democrats, or anyone in support of the current health care law passed last year to focus in on a core idea -- everyone has a right to access health care -- in order to build support.

For myself, and hundreds of other people with dwarfism, one simple idea within the current health care legislation was enough to win support of the package. Prior to passage of the law in 2010, people with dwarfism had no recourse if we were denied coverage by an insurance company. Because dwarfism is identified as a pre-existing condition, insurance companies were within the realm of the law if they denied us coverage. I heard many stories of individuals and families who couldn't find health coverage. One tragic example resulted in the death of the brother of a friend and colleague of mine. My friend's brother had a relatively health issue, but couldn't find private coverage and he didn't qualify for Medicaid.

The 2010 Health Care Legislation finally gave people with dwarfism and with other pre-existing conditions a legal tool. The legislation makes it illegal to deny coverage based upon pre-existing conditions. Now, with the turnover in Congress, health care is vulnerable to repeal. The media reports that the House may vote on repeal this coming Wednesday. Fortunately, again according to media reports, the Senate will most likely vote against a repeal. But considering that the Republican majority in the House is much greater than the Democratic majority in the Senate, Health Care appears to be at risk.

I am happy that the President's Administration is mounting a strong defense of the legislation, speaking out on the benefits of the law and the importance of the law. Here is an opinion piece published earlier this week in the Chicago Tribune by Health and Human Services Secretary Kathleen Sebelius.

As the debate around repeal grows louder this coming week, my hope is that people with dwarfism, people with pre-existing conditions, and all people who value the idea of access to services to remain healthy will come forward with a simple message -- health care is a human right; I won't let you take that away.

short term victory?

Just over a month ago, I posted about the creation of the federally-funded temporary high-risk pool. The pool, which went into affect on September 1 in Illinois, will "provide transitional coverage to 2014 for the currently uninsured with preexisting conditions." The pool will last until 2014, when, under the health care reform bill passed earlier in 2010, it will then be illegal for insurance companies to deny coverage based upon pre-existing conditions. At that point, the pool will no longer be needed. In the September post, I mentioned that the pool, and piece of legislation that makes it illegal to deny coverage based upon pre-existing conditions, is great news for people with dwarfism, many of whom have been denied coverage because of dwarfism. In the past, people with dwarfism who were denied coverage had no legal resource to challenge the denial and, worse, often then had no insurance options.

With the November mid-term elections approaching, it appears that the recent gains affordable people with dwarfism and others with pre-existing conditions may be at risk. I am not a political expert, and don't know the platforms of all the candidates' challenging incumbent democrats, but it seems that if Congress switches from democrat to republican control, the health care bill passed in the Spring would be vulnerable to repeal.

Recently, at a "Values Voter Summit," 2008 Republican candidate Mike Huckabee said that people with pre-existing conditions are uninsurable. He compared insuring people with pre-existing conditions to insuring a house that has burned down or a car that has been totaled. Here a link to the statement from "Not Dead Yet News & Commentary," a blog written by my friend Steve Drake. As a person with a pre-existing condition, not only is such a statement offensive (I'm been called a lot of things in my life - never before have I been compared to totaled car), it's wrong. I'm probably the perfect consumer for my insurance company. Every paycheck, a chunk goes to my health care coverage. But over 10 years, but for a few physicals and a few eye exams, I've never used my insurance. They get all of my money (and all of my employer's money), but rarely do they provide me services. I am just one case, but a pre-existing condition does not determine a person's health record.

But Huckabee is not alone. An October 5 opinion piece in the Chicago Tribune says that repealing the health reform legislation will be realistic if the republicans earn a majority in the House of Representatives -- Dennis Byrne -- Obama Care can and must be replaced The Tribune Opinion piece by Dennis Byrne doesn't mention pre-existing condition as one of the ailments of the law. Bryne specifically targets rising premiums and a doctor shortage as reasons behind discontent about the law. But any attack on the legislation is an attack on pre-existing conditions.

While Little People of America supported the inclusion of coverage for people with pre-existing conditions in Health Care reform, LPA is not a partisan organization. Unfortunately, the organization may suffer a tremendous setback because of partisan politics. Hopefully, whatever party is in power come 2011, decisions will be made not based upon what a political party wants, but based upon what is good for the population. Though I may be biased, I can't understand why full health care coverage for everyone is not a good thing.

I've got you covered

This week, I received an email from the Illinois Campaign for Better Health Care. The email went out to the organization's entire subscription list, thanking the community for its work to help pass the Patient Protection and Affordable Care Act, or federal health care reform. A significant piece of the legislation that Little People of America supported was the guarantee that people with pre-existing conditions (like dwarfism) would not be denied coverage. Under the new legislation, starting in January of 2014, it will be illegal for insurance companies to deny coverage based upon pre-existing conditions. This is important for the dwarfism community because many people have been denied health care because of their disability. As a member of the board of directors of LPA, receiving an email or a phone call from a member or a parent of a little person who was denied coverage was very frustrating because there were no good answers. Sometimes the only help LPA could offer was a letter of support to the insurance company, urging it to offer coverage to the person it had recently denied.

Hopefully, with the passage of health care reform, there will be better answers. Though the pre-existing section of health care reform doesn't take affect until 2014, starting September 1 of this year, at least in Illinois (and I hope other states) there is what is called the federally-funded temporary high risk pool. According to the website (people from Illinois can apply for coverage on this website), "the federally-funded high risk pool will provide transitional coverage to 2014 for the currently uninsured with preexisting conditions."

Though health care reform, especially the pre-existing conditions part, is promising for people with dwarfism, there is still concern that insurance companies will find some sort of loophole to deny coverage or will charge unaffordable premiums. I have no information that proves this won't happen, but at least, for now, people with dwarfism and other types of pre-existing conditions have a legal and a legitimate tool with which to work.

Denied

The most difficult part of my position as Vice President of Public Relations for Little People of America are calls and emails about which I can do very little. Often times, the calls and emails are from people whose health care application has been denied because of a pre-existing condition. The first time I received such a note it was from a father who is a little person and has two children who are also short statured. He had recently switched jobs and was denied coverage when he tried to sign up for a new plan. When I heard about it, I thought surely the insurance company was breaking the law. But after asking around, I soon learned that denying coverage because of a pre-existing condition is legal and that being denied coverage is not uncommon in the dwarfism community.

More recently, an email came in from a family with a one-year old who has dwarfism. They also recently switched coverage. Soon after switching coverage, the family was pre-approved for a neurological check-out. After they received pre-approval, the insurance company contacted the family, explaining that the original application was under investigation. Clearly, when the insurance company learned of the one-year-old's dwarfism, it began looking for reasons to drop coverage.

I am not in the health care or insurance industry, but I seen enough documentaries about health care and have read enough about the health care to know that companies look for ways to deny coverage in order to avoid what the companies believe to be the high costs of covering people with pre-existing conditions. What I don't understand is how a health care industry can be established around the goal of low costs and profits rather than support for people and families who need it, i.e. -- everyone. Obviously, that's naive of me. Most every industry and business in this country and else where is founded on the principle of profit. What's difficult to understand though is profit at the expense of infant children, inviduals and families who need coverage. Again, that's naive me. Even so, it's hard to know what to say to people who are perfectly healthy but, like everyone else, need health care. Unfortunately, just because they are not like everyone else in terms of stature, they are denied. There are options for people who are denied -- petition the state insurance board, apply for public health assistance, try to use current law (genetic non-discrimination act - from what I've heard this is difficult to do). Not everyone has time to be an adovocate though, and not all advocacy efforts are successful.

President Obama campaigned on the pledge to make it illegal to deny health coverage based upon pre-existing conditions. Hopefully, that pledge will become a reality soon. Until then, things might get worse for people at risk of losing or not getting health care because of pre-existing conditions. A recent congressional inquiry investigated the practice of insurance companies rescinding coverage. According to the story, congressional inquiry or not, the companies plan to continue the practice.