Now 18 states are refusing to set up high-risk insurance pools. Virginia’s secretary of Health and Humans Resources, William Hazel Jr., was quoted in today’s Washington Post (5/4/10) as saying that setting up a high-risk pool “is an enormously complicated undertaking.” And it does seem a lot of work for a temporary program that will end in 2014, when it becomes illegal for insurance companies to discriminate against people with pre-existing conditions.

An even bigger problem is that the high-risk insurance pools program is grossly underfunded. Only $5 billion has been set aside for the program over the next 4 years. That is not very much money to insure people who on average have high health care expenses because of their pre-existing conditions. The federal government agency the Centers for Medicare and Medicaid Services (CMS) estimates that the money will already run out next year. And what will the states do then? They could either reduce benefits (which would be hugely unpopular), raise premiums (which would be illegal under the law), or hope that the federal government will come up the money.

Thirty-four states already have high-risk insurance pools. Most are underfunding, and restrictions on benefits and unaffordably high premiums are common. The federal high-risk pools are suppose to address those problems by limiting deductibles to $5,950 for individuals and $11,900 for families, and by requiring premiums to be the same as those of the “standard population.” This means that a person with a pre-existing condition would not pay more for insurance, because he or she is sick.

Another problem with state-run high-risk pools is access. Most people have not even heard of these programs, nonetheless waiting lists are often long. Some people go into bankruptcy while waiting for insurance. Many people end up much sicker because their condition was not treated or managed earlier on. This translates into higher health care expenses in the long run to both patients and insurance pools.

Long waits could also become a problem with the federal high-risk pools. The demand for insurance with high-risk pools is greater than ever due to the economic recession and many people losing their jobs and employer-provided health coverage. But with the program being underfunded, the supply of high-risk pool insurance could fall short of the demand. Moreover, it seems increasingly unlike that the high-risk pools will be up and running by the end of June. Most states do not have the ability to implement such an ambitious program with short notice. In the 18 states that refuse to set up high-risk pools, the federal Department of Health and Humans Services will have to step in to set up pools; and the federal government is not known for swift action. So “immediate access to insurance” may take a while to implement.

That is a huge problem for the Democrats. High-risk pools are one of the first pieces of the health care law to go into effect. Therefore, it is imperative for the Democrats that this program is sufficiently funded and working. If not, the public support for health care reform will start to erode.

MEDICAL HOMES sound nice, kind of like apple pie. Therefore, it is not surprising that medical homes have received a lot of attention in the media, and have been touted as the cure for many of our health care ills, such as poor quality of care, long waits to see a doctor, over-reliance of specialists, and skyrocketing health care costs.

So what are medical homes? Medical homes combine traditional concepts of primary care doctors providing comprehensive care, with the use of information technology. Medical homes improve patients’ access to care by expanding consultation hours, open scheduling, and encouraging email communication with the doctor. Primary care doctors are put in charge of care for chronic conditions, instead of specialists. Each patient will have an ongoing relationship with one doctor, so when a patient has to see a specialist or is admitted to the hospital, the primary care doctor is in charge of coordinating care. Electronic record keeping is seen as essential for the coordination of care and sharing of patient information.

Since primary care doctors are paid a lot less than specialists, proponents of medical homes say it would save money by moving care for chronic conditions, such as asthma, to medical homes. ‘Medical homes’ is also a prominent component of the health care reform bill passed last month. This of course has made specialists nervous that they will lose patients, and more importantly income. Specialists are now lobbying to be allowed to set up their own medical homes, in which they would also provide primary care. In a survey in the New England Journal of Medicine this week (4/20/2010), half of the cardiologists, endocrinologists and pulmonologists surveyed said they provided primary care for at least some of their patients (mostly only a handful of patients). Of course, if cardiologists were allowed to set up medical homes and provide primary care at a cardiologist’s salary, it would eat away any cost savings.

A couple of years ago, I had come down with the flu and had trouble breathing. When I called my primary care doctor for an appointment, I was told that the next appointment was one week out. One of the biggest appeals of medical homes is access. It is not uncommon for returning patients to have to wait more than a week to see the doctor for an acute problem. The wait is much longer for a check up. And if you are a new patient, forget it. Most primary care doctors are already swamped with patients and are not accepting new patients, especially the ones with crappy insurance plans that have low reimbursement rates. Last month, the Washington Post health section ran an article by a young woman who searched for months, and made dozens of phone calls, before finding a primary care doctor in Washington DC who accepted new patients.

And this is the problem with medical homes: by making the doctor more accessible, less booked up, spending more time with each patient, and taking over care from specialists, each primary care doctor must reduce the patient load. But we already have a huge shortage of primary care doctors. Medical homes are only going to make this problem bigger, leaving even more patients without access to primary care.

The IDSA Lyme disease review panel was set up as part of a settlement with the Connecticut Attorney General. Following the release of the IDSA treatment guidelines for Lyme disease in 2006, the Connecticut Attorney General opened an investigation into the IDSA, charging antitrust violations. The investigation found that the chairman of the guidelines panel had handpicked like-minded panelists who had various undisclosed conflicts of interest, such as consulting arrangements with insurance companies. In 2008, the IDSA settled with the Attorney General, agreeing to create a panel to review the guidelines.

IDSA’s controversial treatment guidelines recommends against additional treatment of Lyme patients who fail 2-4 weeks of treatment; even in the case where the patient continue to have disabling neurological symptoms. This recommendation was based on a single 2001 study by Dr. Mark Klempner with New England Medical Center, that found additional antibiotic therapy to be ineffective.

The Lyme Disease Review Panel was established in 2009, and held a hearing in July. At the hearing, Allison Delong, a statistician with Brown University, testified that “the Klempner analysis was inefficient, probably biased, and had an unsatisfying measure of the treatment effect.“ Delong concluded that the study “has substantial statistical problems that prevents its use in formulating treatment guidelines.”

Two other studies (Fallon et al. 2008; Krupp et al. 2003) found benefits to patients from additional antibiotic therapy. So the Review Panel can reach one, and only one conclusion namely that the IDSA treatment recommendations are not scientifically justified in the light of all of the evidence and information provided. It would send shockwaves through the medical community if the review panel does not reach this conclusion.

So why should patients care about some review panel’s report findings? They should because health insurance companies cherry-pick guidelines in determining which therapies are covered. Therapy that falls outside guidelines are considered “experimental” and often not covered. Therefore, it is important that treatment guidelines recommendations are based on good science, rather than based on opinion.

When I first consulted an infectious disease doctor after being bitten by a tick, I thought that I was going to get the best standard of care.  I turned out to be sadly wrong. This doctor, like most doctors, was in a rush to get to the next patient and didn’t have time to take a detailed patient history. He was surprisingly ignorant about tick-borne diseases – especially given that Lyme disease is the fastest growing infectious disease in the country and infectious diseases are after all his specialty.

Moreover, many specialists have conflicts of interest arising from their various financial ties with pharmaceutical companies, medical device companies and health insurance companies. This week Pfizer, the largest drug company in the world, reported that it had paid about $20 million to 4,500 medical professionals for consulting and speaking from July to December of 2009. Though $40 million a year may sound like a lot of money, some experts speculate that Pfizer underreported its payments to doctors – a common problem with self-reporting.

Even more worrisome to patients is that it has become increasingly common for doctors to invest in biomedical, pharmaceutical and medical device companies. Investment agreements often encourage investor physicians to actively promote the products sold by the company. A 2008 article in The New York Times described how 120 spinal surgeons had each invested $50,000 and more in the spinal device company Allez Spine LLC, and the returns on the investment was dependent on how many spinal devices the physician implanted in their patients. This obviously creates a serious conflict of interest.

I don’t know whether my infectious disease doctor had any conflicts of interest, as it is nearly impossible for patients to find out. But that is about to change. The Patients Protection and Affordable Care Act, also known as health care reform, requires drug and medical device companies to disclose payments to doctors of more than $10. In 2013, patients will be able to go to a national database on the Internet and look up their doctor’s name, the names of companies that he or she has consulting arrangements with, and the amount of money he or she has received.

Moreover, drug companies’ payments to medical centers for clinical drug trials will be reported – unfortunately with a four-year delay in reporting. Drug companies fund clinical trials to influence research findings. So it is hoped that shining a light on this practice will make other researchers, FDA regulators, and doctors take a closer look at the research findings of industry-sponsored research. As doctors and medical centers begin to worry that their industry ties will damage their credibility and reputation, more will sever their ties.

There is no doubt that financial arrangements influence doctors’ judgment, at least subconsciously, otherwise industry would not be spending hundreds of million dollars every year. Therefore as a patient, I really want to know who else pays my doctor, so I can make better-informed decisions about my treatment.

It is with a certain amount of sadness that I see the last snow melting.  Along with daffodils pushing out of the ground, come ticks. Adult ticks have wintered over the in leaf litter, and are eager to mate. People out and about enjoying the spring weather may unwittingly end up as the host of a clandestine sex party.

After locating a host, such as yourself, the ticks emit sex pheromones to attract ticks of the opposite sex. Pheromones are a chemical that allows ticks to find each other. It also aids in mating by bringing ticks in the right mood. In the folds of skin and the softness of hair, ticks find the ultimate bliss. A male will breed with several females before perishing from his efforts. Females will only breed once. After feeding one last time on the host, the female drops to the ground and lays her eggs, giving life to thousands of tiny seed ticks.

There are so many different species of ticks in the United States, that even the U.S. National Tick Collection institute at Georgia Southern University cannot keep count of them. But as new native species are discovered in the United States and new invasive species enter the country from abroad, the number has grown to over 100. One of the most dreaded ticks is the common blacklegged tick (Ixodes scapularis), which transmits debilitating diseases, such as Lyme disease, babesiosis, and anaplasmosis.

With the weather warming up, I find myself putting on long-legged pants, tugged into my socks. Soon I will be sweating like a pig in my long-sleeved shirt, pants and hat. I will spray bug repellent containing DEET or permethrin on my body, while trying not to worry about their harmful effects. At night I will search for ticks, knowing that I most likely will overlook them since most ticks are so tiny – the size of a poppy seed.

I already long for freezing temperatures so I can enjoy the outdoors with my two dogs. We can roam carefree in the woods, run through meadows, and roll in the snow. I don’t have to worry about disease-carrying ticks or about cancer-causing chemicals. And I don’t have to look like a total geek with the pants-tugged-into-socks look.  Winter is my favorite time when I can be myself again.

It is time for a reality check after Democrat and Republican leaders met with the President for the much-anticipated health care summit this week. At the summit, there was a lot of talk about increasing competition in the health insurance market. But let’s face it, insurance companies do not make money off sick people. And no amount of competition is going to change that fact.

Insurance companies are competing for healthy people who pay their monthly premium and don’t run up high medical expenses. If I were to lose my current health coverage through my husband’s workplace, I wouldn’t be able to buy insurance in the private market because I have chronic Lyme disease – a pre-existing condition.

Republicans’ fix to this predicament is to allow people to buy health insurance across state borders. But is that really going to give patients more choice? If no insurance company wants to insure me in my own state, surely no insurance company in the next state over would want to insurance me.

The Democrats’ solution is sets up insurance exchanges, spread the risk, and ban discrimination against preexisting conditions. But that isn’t going to change the fact that sick patients are not profitable. Insurance companies will continue to use all the same tactics they use today of losing claims, denying coverage for covered services, setting up incomprehensible review processes, providing unhelpful customer service etc., in the hope that undesirable customers will find another insurance carrier. This will send patients on a wild goose chase on the exchange for an insurance company that wants to insure sick people.

Many months ago, in this never-ending health care debate, a public option was suggested as a way to increase competition. But private insurance companies found the public plan to be too much competition, and lobbied hard against it. At the summit, the public option was not put on the table.

Today I went to the pharmacy to pick up my prescription.  This may not sound like a big deal. But after seven days, 3 failed trips to the pharmacy and five phone calls, it did seem like a major accomplishment to actually have my prescription in hand.

Given that most people who go to the pharmacy are not feeling well, which is exactly why they need prescription drugs, you would think that pharmacies would out of compassion make sure that they have the prescription filled when they say they are.  As in my case, the pharmacy needs three days, yes THREE DAYS to fill a prescription, and still can’t meet their own deadlines.

For whatever reason, pharmacies have about the worst customer service of any private business. I can understand discount pharmacies that sell drugs only slightly above wholesale price, do not put customers first.  But my local pharmacy charges an arm and a leg for drugs. A couple of years ago, I did a survey on the price of prescription drugs at various pharmacies. What I found was that my local pharmacy charges almost 50 percent more for certain prescription drugs, than discount pharmacies such as Sam’s Club and Costco do.  Of course the local pharmacy knows it can get away with it, because most of us are too sick to travel long distances to fill a prescription at a discount pharmacy.

Next month, I have to do it all over again.  Maybe a prescription for anti-anxiety medication is what I need. But then again, I can’t bare the thought of having to make yet another trip to CVS.

About five years ago, my dog Walnut started to limp. It soon took a handful of beef jerky to convince her to go to the dog park. So we took her to our wonderful vet, Dr. Dan Teich, who suspected Lyme disease. Lyme disease is a bacterial infection transmitted by tiny deer ticks. Though we had not found any ticks on Walnut, the dog park was overrun by tick-carrying wildlife, including birds, squirrels and an occasional raccoon; and many of Walnut’s dog friends have had Lyme disease.

Blood tests confirmed the vet’s suspicion and Walnut was treated with antibiotics. At the end of her two-month treatment course she was still limping, so he prescribed an additional 6 weeks. The limp went away, and Walnut is now a healthy 12-year-old dog, who still loves beef jerky.

Walnut’s treatment for Lyme disease is pretty standard for dogs. At no point did the vet tell us that he didn’t think that it was worth the money to treat Walnut. For two-legged patients it is another matter. Some infectious disease doctors don’t think it is worth treating Lyme patients until they recover.

In a letter, dated January 21, 2010, to Virginia legislators, Dr. Phillip Baker, the Executive Director of American Lyme Disease Foundation, wrote: “It should be noted that unjustified long-term antibiotic therapy can impose a great economic burden not only to individuals but also to the public health system… Since the costs of extended antibiotic therapy for the treatment of CLD/PTLDS [chronic Lyme disease/post-Lyme disease syndrome] range from $8,000 to $30,000 per patient, they can add significantly to the over-all costs, thereby making it even more difficult for others to obtain the coverage they need to protect themselves and their families.”

I was one of the unlucky Lyme patients who failed the 2-4 week therapy recommended by the Infectious Diseases Society of America (IDSA). And it took several years of additional therapy before I got better.  Sure my continued treatment was an economic burden. But not treating would have been an even bigger economic burden, as I would have continued getting sicker and sicker, requiring ongoing treatment for complications, such as neuropathy, arthritis and cardiac problems — likely for the rest of my life.

Moreover, a 2004 study by the CDC found substantial non-medical costs to patients with late-stage Lyme disease. Lost earnings, resulting from either job loss or reduction in hours worked, exceeded the medical costs by a factor of six. Overall, the average total costs deriving from one case of late-stage Lyme disease was estimated to be $20,850 (in 2009 dollars) per year. And that does not include the economic costs deriving from loss in productivity resulting from spouses and parents taking time off from work to provide care for a family member with Lyme disease. Nor did it include the costs of special education for children with learning disabilities due to Lyme disease, or the costs associated with adults needing in-home or assisted living care services.

To argue that we cannot afford to treat Lyme patients who fail the IDSA recommended 2-4 week treatment is absurd. As a society, we cannot afford to continue ignoring the growing epidemic of Lyme disease. My dog Walnut’s life was considered worth enough to continue treatment until she recovered, and so should my life.

What happened? Last week the news were filled minute details of the ever expending health care bills. Then Massachusetts’ voters killed national health care reform. Massachusetts of all states. Massachusetts is the only state that has universal health care. And universal health care is popular there – two in three voters support it. Even newly-elected Senator Scott Brown voted for universal health care, as a state legislator, in 2006.

Outside Massachusetts there also continue to be strong support for health care reform. Poll after poll has found that the majority of Americans think that our health care system is not working well. In a study by Harvard School of Public Health, 31 percent said that that the health care system “needs to be completely rebuild.” An additional 51 percent said that there are “some good things, but health care needs fundamental changes.” Only 15 percent felt that “it works pretty well, and needs only minor changes.”

But democrats have done a poor job convincing people that their proposal to health care reform would fix the health care system. The Harvard study found that less than 1/3 of Americans thought that the democrat’s health care proposal would make their health care better. That is pretty dismal support for a bill that would extend coverage to 30 million people, who do not currently have coverage.

So what now? Our health care system is still broken. Well it is still possible that enough democrats in the House of Representatives will pass the Senate version of the heath care bill; which would move the bill to the President’s desk for signing. On the other hand, democrats may just drop health care reform all together. Hoping that voters will have forgotten all about their miserable failure reforming the system come elections in November.

Alternatively, democrats could try to pass a more modest bill. There is broad support for outlawing some of the most abhorrent practices by private health insurance companies, such as discrimination against people with preexisting conditions, annual and lifetime caps on benefits, and dropping coverage for people who become sick. It would not help people who cannot afford to buy insurance. But it would be a small step in the right direction.

Last summer I received an email from President Obama.  It began with “Dear Friend” and went on to outline eight basic principles for health care reform. On top of the list was “no discrimination for preexisting conditions.”

Now half a year later, the health care bill is being finalized after input from lobbyists for insurance companies, pharmaceutical companies, and medical organizations, as well as industry-funded “interest” groups claiming to represent patients. Some of the eight principles survived the legislative process, while others are on life-support.

Discrimination for pre-existing conditions, one of the most egregious practices by health insurance companies today, will be banned. Under both the House and the Senate bills, people will be able to purchase health insurance coverage on an exchange regardless of their health status. Moreover, premiums on the exchange will be community rated. This means that a person with chronic disease, such as Lyme disease, would pay the same premium as a person in perfect health would pay.

Other principles, such as no exorbitant out-of-pocket expenses and co-pays, no annual or lifetime caps on coverage, and no dropping of coverage and insurance renewal guarantee, fared less well. For instance, “no annual or lifetime caps” ended up being “no unreasonable lifetime caps” in the Senate bill. Which, as Adriano Espaillat noted on the Huffington Post, every legislator knows is a loophole an insurance company executive can drive a truck through. Moreover, the senate bill would grandfather in annual lifetime caps for the 90 million people who have plans with such caps.

While health plans offered on the exchange will be regulated to limit caps, out-of-pocket expenses and copays; there is nothing to prevent my health plan, and others provided through employers, to keep charging exorbitant copays of more than 50 percent for some out-of-network services. And I am sure that my plan will continue to do so.

The Obama’s email ended by warning me, and the millions of others who also received it, that we were going to see an avalanche of misinformation and scare tactics from “those seeking to perpetuate the status quo” – as the President so eloquently put it. Unfortunately, some of those seeking to perpetuate the status quo were invited to the Hill and had their voices heard over the voice of millions of patients.