by Jeff Byrd

Reg Lee has hemochromatosis and no insurance.

Lee wasnt one of the uninsured, and he wasnt underinsured. He had good insurance until he got sick. Actually, as a successful and prudent businessman, he had sought out the best insurance money could buy health, life, and disability insurance.

So, he thought he had great coverage. He was paying $1,200 a month for health insurance alone, back when he was in the pink. But when he became disabled, his insurance policies proved not to be worth much.

Lee, 62, has lived in Landrum with his wife, Mary, and his eight-year-old son David since 2001. It was in 2007, after nearly a decade of referrals and tests, that he learned he had a combination of idiopathic thrombocytopenic purpura (ITP), a bleeding condition, and liver disease caused by the hemochromatosis.

His liver, the doctors told him, was now at Stage 5, the final phase of liver disease. His platelets, at 28,000 per microliter, were down to 10 percent of normal.

I had always been the picture of health, Lee said.

That picture changed about 1996 when he blacked out one day while visiting New Orleans on business. From that day until 2007, he underwent a series of inconclusive tests and more and more referrals, all trying to find the cause of his growing maladies.

Hemochromatosis is a genetic disorder that interferes with the bodys ability to break down iron. As a result, too much iron is absorbed from the gastrointestinal tract.

Clouds the brain

With hemochromatosis, the liver filters iron-engorged blood and becomes diseased. The spleen collects and holds damaged cells and becomes enlarged. The pancreas, kidneys, and heart are attacked.

Hemochromatosis is the most common genetic disorder in the United States. It affects an estimated one of every 200 to 300 Americans, men more than women, particularly Caucasians of European descent. Its symptoms typically begin to appear between the ages of 30 and 50.

Those with a family history, like Lee, whose father had liver disease, bear the highest risk.

A person with a malfunctioning liver suffers all kinds of symptoms. Even the ability to think is impaired as the sufferer can develop higher levels of ammonia, clouding the brain. Lee spent a recent weekend at Carolinas HealthCare in Charlotte close to slipping into coma.

Most days, I am in bed most of the time, Lee said in an interview recently. Due to fluid build up, I have lots of pain in my legs and abdomen. I have nausea and vomiting, and extreme itching. My weight zooms back and forth in about 25-pound cycles.

One common treatment to reduce the iron in the blood is phlebotomy bloodletting which keeps the patient anemic. Lees low platelet count, however, rules that treatment out.

Nonetheless, with these competing ailments taking him down, they have not taken him out. Lee has already outlived the doctors expectations several times.

His super-charged immune system, which he believes is probably the cause of his low blood platelet count, is also likely responsible for his longevity in the face of such odds.

The last doctor to give him an estimate said, Six months to a year. That was in January, 2008.

Now, with no means of paying for a transplant, he just hopes to survive long enough to reach the two-year anniversary of his Social Security disability designation, next May 14th, when he can enroll with Medicare. He hopes Medicare will pay.

Approved for transplant

Though hes not working for pay these days, he continues to work.

I spend my time now on health care reform and witnessing to those who are sick or down due to the economy, he said. I speak to people from all over the country who are in need.

Lee never expected to be among them. He had planned ahead and it looked like that planning was paying off in a crisis.

About six months after the diagnosis was made, Lee was approved in May 2008 by Empire Blue Cross/Blue Shield, which serves eastern New York State, for transplant expenses up to $1.5 million.

He was placed on the United Network for Organ Sharing (UNOS) list of 18,000 people awaiting new livers.

Only 8,000 livers a year are made available. But Lee was fortunate. Last February, he was put on notice that his transplant opportunity was near. He was on call 24 hours a day.

Just two months later, however, in April of this year, his hopes were dashed. Although he had previously been approved, Empire BCBS canceled his health insurance citing the fact that his prior employer, Circuit City, had declared bankruptcy in early 2009.

UNOS de-listed him.

Lee last worked for CCI, the Fortune 500 parent company of Circuit City, CarMax and a variety of other companies. He was a corporate district manager, in charge of new market development and management training for Circuit City.

Wildcat oil drilling

Lee had earned his stripes as a savvy businessman since 1965. He traveled constantly.

I consider Charlotte (N.C.) and a 747 my home, he said.

Lees resume would convince most readers they were reviewing the careers of ten men. He ran or worked for 13 different businesses, most of which he started and owned.

He began in 1965 owning radio stations with PAC Broadcasting, and went on to own all sorts of businesses, one booking for the music industry, others in the manufacture of fine jewelry, advertising, photography, modeling, commercial real estate, restaurants chain, log homes, and wildcat oil drilling.

He worked early on for Belk-Hudson Stores as a merchandise manager, and finished his career from 1984 to 2007 consulting and giving motivational seminars, as well as working for Circuit City.

In 2007, when his health forced him to leave the workplace altogether, he took with him health insurance coverage under the COBRA laws.

According to the U.S. Department of Labor, the Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1985, signed by President Reagan, gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events.

Coverage can be maintained under COBRA, at higher premiums than under the group plan, for up to three years. That is, unless the former employer which extended coverage ceases to maintain any group health plan.

Wipe myself out?

In closing its doors, Circuit City left about 43,000 hourly and salaried associates without any group insurance plan in place. As a result, Blue Cross Blue Shield had the legal right to cancel Lees insurance, and the company did just that.

I had their premium policy it would even have taken care of (transplant) rejection drugs, Lee said, a cost of about $4,000 per month. Over 20 years, I very seldom used health insurance. I probably didnt have $5,000 health needs a year.

Lee pays his medical expenses out of his own pocket now. He works with eight surgeons, a dietologist, a hepatologist (doctor of the liver, gallbladder, biliary tree and pancreas), an oncologist (cancer doctor), and a hematologist (doctor of blood diseases).

One doctor visit can cost $800, one pill $360. He uses medicines costing $1,000 a month. Infusions for blood platelets can cost $8,000 a week.

No doubt, he is one of the lucky ones who made enough money in his career that he can afford to meet such expenses. But they are draining away the estate he will leave to his wife and children.

I had to decide, Do I wipe myself out? Do I spend all the money and take bankruptcy and leave my family with less than a normal lifestyle? We sold off all our properties. We have a house in Spartanburg and a vacation cottage here (in Tryon). We stay here, so (our son) David can have the Leave It To Beaver life. We sold our house in Atlanta, in an equestrian neighborhood. Selling our 1,700-square-foot home in Spartanburg will not pay for a liver transplant. We have no new cars.

Lee had planned for a potential disability. He had purchased an Aetna Long Term Disability Insurance policy which promised to pay 60 percent of his annual income through the year 2013. With Social Security, he expected to have 80 percent of his working income continue.

Aetna actually approved disability payments for Lee, but referred him to a clause in his policy which said that any income he might receive from any source would be deducted, including all Social Security paid to him and to his son, plus any pension.

The disability payments were to be tax free, he said, but they deduct the other income gross.

In the end, he said he doesnt get much help from his disability policy.

Paid up life insurance

He also planned for the worst case, putting life insurance in place for his family. He had close to $700,000 in coverage, under a policy that promised that if he became permanently disabled, the premiums would automatically be paid up for life.

Again, however, there was a clause. Instead of paying up the policy, Aetna canceled it in April 2008.

It turns out that the policy included a provision stating that if the insured person becomes disabled after 60 years of age, not only will the policy not be paid up, but Aetna can cancel the policy altogether.

The policy says they do have to sell you a risk policy, for $100,000 of coverage, if you want it at a premium of $2,800 a month, Lee said.

I was trying to get my disability declared for years, he said. Even from the time it was obvious I was disabled, it took the doctors another year to get this thing approved. Aetna was telling me over the phone, Dont worry.

Lee turned 60 in December, 2006, not realizing his life insurance disability cut off date had just passed.

In May, 2008, Carolinas HealthCare doctors finally gave him a disability certificate, which he filed with Social Security. By September, 2008, Aetna had dropped his life insurance.

Seven months later, BCBS canceled his health insurance.

All other avenues

Lee said a special MRI could have saved everyone a lot of money and detected the hemochromatosis years ago, which would have been in time to allow him to access all his insurance policies. But such a procedure wasnt covered by BCBS until all other avenues were explored, he said, and so it wasnt prescribed.

Even if the disease had been found earlier, doctors say there is no cure, but there were ways to keep the liver from self-destructing, Lee said. That is, before the liver disease reached Stage 5. Those options are now out, and only a transplant will save his life.

Lee said he tells his story now, but not to ask for charity. If you want to give to a sick person in need, he said, give to a child. He tells his story because he believes reform is needed.

Congress needs to have insurance reform to require plain language in these policies. I have become an insurance specialist and it is scary what is in those policies, the way they word them. They include it all without you realizing what youre signing.

Lee now works to raise awareness of how insurance companies work, and the lobbying that goes on in Congress.

The Lees actually tried to get help from Congress. They wrote to Congressman Jim DeMint about BCBS health insurance cancellation. DeMint advised them to go to the Better Business Bureau.

They went to meet with De-Mint when he was at The Beacon in Spartanburg last spring and showed him the letter he, or more likely his staff members, had written. They also talked with the media there, but Mary Lee said she believes she saw DeMints staff pull the press aside and kill the story.

They wrote to Sen. Lindsey Graham. The senator wrote back, saying the Lees insurance problem is not a federal matter.

Of course it is, Reg Lee said. Insurance laws are federal laws.

(Congressman Bob) Inglis did call. He said, There is nothing I can do for you. He did try.

Companies determine life

I never felt anyone owed me a living, Lee said. I like to take chances, have fun at business, work for yourself. use your creative mind to help others, create things that help others. We live in a country built on opportunity and entrepreneurship, but there are certain things you do not capitalize on, like health care and education.

Health care is bigger than what people understand, Lee said. People have been brainwashed about the public option. The fact is the cost could be reduced under government if everyone was under health care. Everyone ought to have a right to health care and an education.

There are people I see in horrific shape. I know a guy with Multiple Sclerosis, for instance, who cant buy his medicines. He had lost everything and was afraid he would lose his home, Lee said. I have heard the stories. The insurance companies will find anything in all that paperwork.

One key challenge, Lee said, is that all those hidden clauses are protected by insurance company lobbyists.

The companies determine your life and the laws through contributions from lobbyists, Lee said. You dont know it until it happens to you. Even the hospital was shocked (when they canceled his insurance.) If you have a problem, you cant get health insurance. If you do get insurance, it is bare bones and not catastrophic.

To buy health insurance now, just for his healthy wife and eight-year-old son, would cost $10,000 to $14,000 a year, with high deductibles.

I never dreamt I would be at this place in my life, Lee said. I should have realized then that insurance companies are just rogues. As a young man, I could have taken the money I spent on life and health insurance and invested it and been better off.
See responses from health insurance agent Glenn Hanford and comment from Reginald Lee in his own words regarding health care reform in related health care articles.