Guest post by Mickey7
I have been asked by Patrick to guest post in reference to Sarah Palin’s recent inexplicable decision to charge a speaking fee to appear at an event for a special needs advocacy group (Rainbow Omega) versus giving her services away for free to the incredibly wealthy and powerful National Rifle Association. In her speech to the Rainbow Omega, Mrs. Palin once again stated her belief in limited government intervention for healthcare - even in the case of serious or catastrophic illness. She did this with full knowledge that this stand directly impacts access to needed services for those with special needs, including her own son. This stubborn insistence on clinging to a partisan mantra despite clear evidence of the failure of that position should concern us all. After all, this is a woman who believes herself qualified to craft national policy on crucial issues like healthcare and medical research spending that will impact all of us.
Because I have been working in the field of patient advocacy for the past 20 years, I pay particular attention to issues related to healthcare access and medical research policy. Leaving aside for the moment the utter hypocrisy of someone whose family benefits from government healthcare (Todd Palin and the Palin children are covered by a government-funded health program due to being part Native Alaskan, as it was revealed in Bristol's custody trial), but who does not want the average American—even Pitbulls with Lipstick or Mama Grizzlies—to receive similar care, Mrs. Palin demonstrates unforgivably appalling ignorance of policy related to healthcare and medical research
Let’s compare Mrs. Palin’s position on these two issues (healthcare reform and medical research policy) to reality and see how she stacks up:
Healthcare Reform
Because I have been working in the field of patient advocacy for the past 20 years, I pay particular attention to issues related to healthcare access and medical research policy. Leaving aside for the moment the utter hypocrisy of someone whose family benefits from government healthcare (Todd Palin and the Palin children are covered by a government-funded health program due to being part Native Alaskan, as it was revealed in Bristol's custody trial), but who does not want the average American—even Pitbulls with Lipstick or Mama Grizzlies—to receive similar care, Mrs. Palin demonstrates unforgivably appalling ignorance of policy related to healthcare and medical research
Let’s compare Mrs. Palin’s position on these two issues (healthcare reform and medical research policy) to reality and see how she stacks up:
Healthcare Reform
In her speech to Rainbow Omega about special needs kids, Palin trotted out her tired lies about Obamacare. In a Fox News interview of February this year, Palin stated (paraphrasing) “We should let the free market dictate healthcare so Americans have choice.” Apart from the obvious fact that millions of Americans actually have no ‘choice’ based on outrageous premiums and the passive eugenics of pre-existing condition denials, Palin clearly has no idea of the history of private insurance in this country—specifically the fact that health insurers are exempt from the Sherman Anti-Trust Act. They never have operated under ‘free market conditions’ and are legally able to collude and price fix. This exemption was granted during the rise of the New Deal to encourage private industry to take on health insurance, but was slated to expire in 1947. Even back then, the industry had clever lobbyists able to bend Congress to their will resulting in the situation we have today where the health insurance industry and Major League Baseball being the only industries exempt from Sherman. This explains why many states have only one or a few insurers (where’s the competition?) and the rates for all of them remain about the same. There is no free market competition in the health insurance industry and there never has been. Palin, as usual, is flat out wrong and/or lying.
In fact, the market has been rigged from day one to provide profit and to specifically protect health insurers from market competition. This explains why private insurers in states like Michigan can raise premiums by 59% and get away with it. There is no competitive option in Michigan—you either pay the extorted insurance premiums or you go without. Similar problems exist in California and many other states. Prior to the passage of healthcare reform, which Palin worked so diligently to defeat, Congress could only scold insurers and plead with them to be nice because they had done nothing illegal and the government was powerless to reign them in. It remains to be seen how effective reform will be at fixing this situation.
The reality of the healthcare situation for millions of Americans living with rare, genetic and chronic diseases is much different than most Americans assume and than what Palin would like you to believe. For one thing, most people mistakenly believe that if you receive a devastating diagnosis you are automatically eligible for government assistance through Medicare, Medicaid or SSI/SSD programs (or in Palin’s dream world, you will automatically receive help through a church-based charity).
The reality of the healthcare situation for millions of Americans living with rare, genetic and chronic diseases is much different than most Americans assume and than what Palin would like you to believe. For one thing, most people mistakenly believe that if you receive a devastating diagnosis you are automatically eligible for government assistance through Medicare, Medicaid or SSI/SSD programs (or in Palin’s dream world, you will automatically receive help through a church-based charity).
There are currently 38 diagnoses that are granted automatic coverage. There are over 6,500 rare diseases—most of them genetic, lifelong and devastating and tens of thousands of more common disorders that impact ability to work and diminish quality of life, yet are not necessarily covered by current government programs. Clearly, the vast majority of people with serious illnesses languish with little hope of any help from the government. They can petition for aid, but it is often denied until their diseases have progressed to the point where they are facing the end of their lives. This means that they spend years trying to navigate through a private insurance system that is looking for any reason to deny them the care they need.
My own experience with my daughter’s illness is a good illustration of the real situation for American families with special needs. My daughter was diagnosed with a rare genetic, progressive and incurable disease at age 7. Receiving the diagnosis was a shock and we were devastated. But we found our troubles were just beginning. Having always been pretty healthy myself, our introduction to the realities of the American healthcare system for those with real needs was brutal. Despite having two private insurances, by the time I was 30 I was technically bankrupt from co-pays and medical costs that were not covered due to arbitrary insurance decisions about what was ‘reasonable and customary.’ My daughter’s serious infections required antibiotics which were not approved for use in children or for her specific disorder (no drugs are approved for her disorder—there are not even enough people diagnosed with it to do proper clinical trials) so insurance companies—legally--didn’t have to pay for them. She was sick all the time and often hospitalized, but still not technically disabled (another issue for those with rare diseases—disability ratings and coverage for therapies are often tied to diagnosis code, which many rare disorders do not have, resulting in an obscene situation where critical services are denied based on purely administrative and often silly rules) so she didn’t qualify for any federal program. Her ‘maintenance’ therapy took 3-4 hours per day. That, plus her frequent hospitalizations made it very difficult for me to hold down a full-time job. I did what I could, barely making ends meet, but still too ‘wealthy’ to qualify for Medicaid (I made less than $15,000 a year at the time).
My own experience with my daughter’s illness is a good illustration of the real situation for American families with special needs. My daughter was diagnosed with a rare genetic, progressive and incurable disease at age 7. Receiving the diagnosis was a shock and we were devastated. But we found our troubles were just beginning. Having always been pretty healthy myself, our introduction to the realities of the American healthcare system for those with real needs was brutal. Despite having two private insurances, by the time I was 30 I was technically bankrupt from co-pays and medical costs that were not covered due to arbitrary insurance decisions about what was ‘reasonable and customary.’ My daughter’s serious infections required antibiotics which were not approved for use in children or for her specific disorder (no drugs are approved for her disorder—there are not even enough people diagnosed with it to do proper clinical trials) so insurance companies—legally--didn’t have to pay for them. She was sick all the time and often hospitalized, but still not technically disabled (another issue for those with rare diseases—disability ratings and coverage for therapies are often tied to diagnosis code, which many rare disorders do not have, resulting in an obscene situation where critical services are denied based on purely administrative and often silly rules) so she didn’t qualify for any federal program. Her ‘maintenance’ therapy took 3-4 hours per day. That, plus her frequent hospitalizations made it very difficult for me to hold down a full-time job. I did what I could, barely making ends meet, but still too ‘wealthy’ to qualify for Medicaid (I made less than $15,000 a year at the time).
This is the reality for families with special medical circumstances. You are effectively shut out of the American dream at the moment of diagnosis and face a lifetime of drowning in debt with little hope of relief. When you should be concentrating on finding the best care for your loved one, you are snowed under by medical bills, exhausted by lack of resources and frustrated by the limited options that exist to improve your circumstances.
As an adult with a rare, chronic condition, my daughter requires a machine to keep her lungs clear ($15,000 one-time expense), an antibiotic that can be inhaled through another machine ($4,917 per month for the drug; $1,200 one-time expense for the nebulizer), one or more oral antibiotics in addition to the inhaled one ($800 to $1500 per month) and a drug to thin out her lung secretions ($1,800 per month). These are her ‘healthy’ expenses to keep her from getting sick. When she does get sick, those expenses double or triple, including the cost for multiple hospital stays per year. There are families in our group who have 2 or 3 children with this disorder, who face these costs times 2 or 3. Typical co-pays for drugs are 20-30% of the total cost. Medical devices are often not covered at all or if they are, the coverage caps at a few hundred dollars per year. Believe me, we looked for help from any source possible and there are not any church groups or independent charities willing or even able to cover these costs, despite their sincere desire to help. Pharmaceutical company programs to provide access generally require recipients to live at poverty level or are diagnosis-specific and only available to people with specific diagnoses. To suggest that families should be personally responsible for their medical expenses when the monthly expenses far outweigh their monthly income is as insulting as it is ridiculous.
Medical Research
As an adult with a rare, chronic condition, my daughter requires a machine to keep her lungs clear ($15,000 one-time expense), an antibiotic that can be inhaled through another machine ($4,917 per month for the drug; $1,200 one-time expense for the nebulizer), one or more oral antibiotics in addition to the inhaled one ($800 to $1500 per month) and a drug to thin out her lung secretions ($1,800 per month). These are her ‘healthy’ expenses to keep her from getting sick. When she does get sick, those expenses double or triple, including the cost for multiple hospital stays per year. There are families in our group who have 2 or 3 children with this disorder, who face these costs times 2 or 3. Typical co-pays for drugs are 20-30% of the total cost. Medical devices are often not covered at all or if they are, the coverage caps at a few hundred dollars per year. Believe me, we looked for help from any source possible and there are not any church groups or independent charities willing or even able to cover these costs, despite their sincere desire to help. Pharmaceutical company programs to provide access generally require recipients to live at poverty level or are diagnosis-specific and only available to people with specific diagnoses. To suggest that families should be personally responsible for their medical expenses when the monthly expenses far outweigh their monthly income is as insulting as it is ridiculous.
Medical Research
The only hope for many with rare or devastating diseases comes from the promise of medical research that will provide effective treatments or possibly even cures. An example of why this type of research is so crucial can be found in the cystic fibrosis (CF) community. CF is a genetic disorder of metabolism that results in excessively thick mucus. The thick mucus ‘gunks up’ organs of digestion and the airways in the lungs leading to malnutrition and respiratory failure. Early in the 20th century children with CF did not live more than a few months or years. Dedicated research efforts sponsored by both the federal government and the private CF Foundation have improved both life expectancy and quality of life for people with CF, so that now the average life expectancy is around age 40 and some individuals with CF are living long enough to require geriatric care. Additionally, the treatments devised to help patients with CF (which affects roughly 30,000 Americans) are now used to help millions with lung disease. If you know anyone with asthma or COPD, you can be sure that some of the therapies they use to relieve their symptoms came directly from research in CF.
Tragically, Mrs. Palin has clearly indentified herself as someone who does not understand or support medical research. In fact, she used her one and only policy speech during the 2008 election to decry money spent foolishly on medical research. As is often the case when politicians attempt to criticize science for purely political reasons, Mrs. Palin managed only to demonstrate her ignorance about the topic, something I addressed in an open letter to her in October of 2008.
As the mother of a special needs child, I feel strongly that Mrs. Palin—as both a mother and de facto political leader—cannot afford the luxury of this sort of ignorance. If, as she claims, she believes that God gave her a special needs child, then he also gave her the responsibility to properly care for that child, including educating herself about his medical condition, making sure he has access to the services and care he will need throughout his lifetime and supporting research efforts to find better treatments or possibly even a cure for his condition.
A cursory look at the reality of federal spending on medical research will quickly demonstrate the falseness of Palin’s position. Despite her accusation that money is frivolously wasted on medical research, the facts show that this is far from the truth. For example, the annual budget for the National Institutes of Health (NIH)—the government body responsible for advancing medical knowledge through research—equals roughly 1-2% of the total budget. In contrast, defense costs gobble up between 20 to 39% of the total budget (it is hard to know for sure because there is a budget line item for the Department of Defense, but it does not include discretionary spending which most analysts believe nearly doubles the DoD budget).
A cursory look at the reality of federal spending on medical research will quickly demonstrate the falseness of Palin’s position. Despite her accusation that money is frivolously wasted on medical research, the facts show that this is far from the truth. For example, the annual budget for the National Institutes of Health (NIH)—the government body responsible for advancing medical knowledge through research—equals roughly 1-2% of the total budget. In contrast, defense costs gobble up between 20 to 39% of the total budget (it is hard to know for sure because there is a budget line item for the Department of Defense, but it does not include discretionary spending which most analysts believe nearly doubles the DoD budget).
Rare diseases fare even worse in the budget wars, with the Office of Rare Diseases Research at NIH receiving a paltry .00051% of the annual budget. This despite the fact that one in 10 Americans technically has a rare disease--defined as those affecting fewer than 200,000 people—including most disorders that are classified as ‘special needs.’ To put this in perspective, we spend between $2,213 and $3,433 per citizen to support the Department of Defense compared to $103.33 per citizen for all medical research and, sadly, only $.06 per citizen for programs dedicated to rare diseases through the Office of Rare Diseases Research. (All statistics taken from the official Government Accounting Office website).
I think most rational people can take from this that we have sadly misplaced priorities as a society. Perhaps the average American can adopt a lazy attitude when it comes to fully understanding the facts related to policy issues, but someone who wants to dictate or influence policy, as Palin clearly does, simply does not have that luxury. We need to be clear on Palin’s policy positions related to healthcare access and medical research (and no doubt other important issues I am not qualified to address): They are intellectually lazy, totally dishonest and unforgivably cruel—especially when one considers her own child stands to be harmed by them. The fact that Mrs. Palin fails or refuses to grasp important policy considerations is not a reflection on the merit of the issues, but on the intellect of the critic. Willful ignorance is not a campaign strategy.
I think most rational people can take from this that we have sadly misplaced priorities as a society. Perhaps the average American can adopt a lazy attitude when it comes to fully understanding the facts related to policy issues, but someone who wants to dictate or influence policy, as Palin clearly does, simply does not have that luxury. We need to be clear on Palin’s policy positions related to healthcare access and medical research (and no doubt other important issues I am not qualified to address): They are intellectually lazy, totally dishonest and unforgivably cruel—especially when one considers her own child stands to be harmed by them. The fact that Mrs. Palin fails or refuses to grasp important policy considerations is not a reflection on the merit of the issues, but on the intellect of the critic. Willful ignorance is not a campaign strategy.
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