So last Wednesday night I walk into an Irish pub in Haverhill, a city about 20 minutes from my home, with Kevin. "The Peddler's Daughter" is a wonderful little piece of the old country, in a cozy cellar location, with great food and a lovely Irish atmosphere, run by real Irish people. It's one of our favorite places to eat. Great fish and chips; homemade ketchup.

About an hour later a young man walks into the pub and heads to the bar, and I feel like i know him. Sure enough, I do. It's Tom M., the young man who tiled my cellar last fall. At that time was part of a work crew from a local contractor, and he surprised me, as he was putting in the tile, when he said, "Does your son have hemophilia, too?" Apparently, he figured it out from the photos I have of Paul Newman and me at Camp Hole in the Wall (can't miss that autographed picture, front and center as you walk in). We chatted and I learned he has mild hemophilia and lives in Haverhill. He and my son Tommy even have the same hematologist. Hmmm. I have people from all over the world on my mailing list but not someone who lives 15 minutes away? Well, he and his family were not active in the community. I added him to my mailing list, gave him a free copy of my book and sent him on his way, leaving me to enjoy my new floor.

Two months later Tom stopped by my office with news. "I quit my job," he said hesitantly. As he is almost the same age as my Tom, I guess I kind of treated him with the same care and concern I would my own son. "What are you, crazy?" I said. No job, no insurance; no insurance, no factor. What was he thinking? He didn't like his boss. And with no college education, it would be tough to find another job. I lectured him a bit and then armed him with a mission: call your hematologist; call your home care company and very quickly, call PSI. Tom had never heard of PSI. When I explained to him that it could save his life, I guess he listened.

Off he went and months went by. I didn't hear from him. And then, in all the bars in all the world, he walks into mine.

"Hi, Tom?" I asked, eyeing him in the dim light.

"Mrs. Kelley!" he exclaimed, recognizing me. Then, "I got a job!"

Poor kid: now he's treating me like his mother!

I was thrilled for him. Of course, there is a waiting period for those with pre-existing conditions... not to worry. Tom amazed me when he said, "I called PSI like you said and they are covering me until my new insurance kicks in."

Wow. Here was a kid who never attended a hemophilia meeting, went to camp once, doesn't know anyone else with hemophilia, quit his job not realizing the dire consequences, couldn't name his factor brand... and he did it. He got himself back on track. I was so happy! He was too.

While the photo is very dim (cell phone + pub lighting) I hope you can see that we are nonetheless beaming! With my son gone off to college, Tom M., is now officially the person with hemophilia who lives closest to me. So I do kind of feel like his mom, and hope we meet again!

Kudos to PSI: you don't know Tom but you have changed his life. Thank you, Dana, thank you everyone at PSI!

(To learn more about PSI and how they help people with chronic disorders who lose their insurance, go to www.uneedpsi.org)

Labels: hemophilia, Insurance, job loss, PSI

I had a nice visit this week from a young man with hemophilia named Tom. Not my son, another nice young man named Tom. I have determined that this Tom, age 26, is the person with hemophilia who now lives closest to me. Even my own son doesn't live with me anymore, so he can be a substitute.

Anyway, the way we met was strange. Last September I decided to rip up the carpet in my basement, which was in dire need of extermination, after years of pets and children had taken their toll. I hired a local flooring company to place lovely tiles that are immune to regurgitated dog food and ground up Doritos. One of the three young men tiling my floor asked me, "Does your son have hemophilia? Because I do." He had seen photos on my basement walls of me with Paul Newman at Camp Hole in the Wall (oh yeah, can't miss that photo), and put two and two together. Here he was, on his knees all day, using really sharp cutting tools to tear up the carpet! We talked for a long time, and I sent him away with all kinds of books and newsletters, and told him to contact me if he ever needed anything. He only lives about three miles away.

So this week Tom did stop by. He quit his job. Tom, Tom! What were you thinking, I wailed, as if he were my own son. Now he has no insurance and no way to pay for factor. No unemployment checks, nothing. Tom also didn't know what to do. He had never really been connected to the community, even though, as I learned, he and my son Tommy had the same nurse as children.

My first thought was, don't get any more factor sent you from your home care company. If his rep decides to send a quick shipment and does not check in first... Tom could be stuck with a bill he could never afford. Did he contact his home care company immediately to stop any more shipments? No. I made him promise to call that afternoon, so he will not accidentally get stuck with a big shipment that would eventually ruin his credit rating.

Did he tell his HTC? No. That would be his next call. Does he know what product he uses? Yes. And thankfully, his home care company enrolled him in a coupon program, so he has lots of coupons. Cash them in! He should get some free factor.

After talking, Tom saw his error. A person with hemophilia if at all possible should never just quit their job. So much preparation needs to be done first. At least we have lots of help in this community. From ACCESS to PSI to the Hemophilia Hotline, Tom has many resources to contact for advise and help. And as he walked out the door (I couldn't tell if he was happy or sorry he came), I handed him this issue of PEN--"What To Do When You Lose Your Insurance." The forlorn young man on the front could have been him.

Guys with hemophilia--don't quit your day job. Tough it out for the sake of your health. Or I am coming to lecture you, too.

Labels: Insurance, PEN, quitting your job

The return trip from Africa required some 30+ hours in transit, and flying coach on these long trips sometimes leaves me with a very stiff back. Yoga helps, but so does a visit to one of my favorite people, my chiropractor. However, I just received notice from my insurance company that it is only covering 12 visits. Any more and I need referrals, certifications, x-rays, passport, a note from my mother and proof of my existence.

Okay, so I'm kidding--just a little. But seriously, in keeping with the current health expenditure cutting trends by the insurance companies, things are changing rapidly. If I am not careful, do not read the fine print, and keep track of my visits, I could end up with a whopper of a medical bill. This happened to someone I know who also went to her chiropractor, whose office was less than forthcoming about what was and was not covered under her insurance. $1,000 is a lot to be hit with during the holidays.

The end of the year is a good time to review all your insurance policies. Call your insurance company and double-check on any changes for the New Year. You could have changes in co-pays, coverage, and deductibles. Call your human resource department at your place of employment and also check to see what has changed. We are also getting notices from Kevin's employer about such changes for 2008. Try to stay one step ahead, so you don't get left behind!

If you need any insurance help or have any questions, call the new toll free Bleeding Disorders Insurance Hotline -- 800-520-6154, sponsored by Baxter BioScience. This innovative service is just what we need in these changing times.

Great Book I am Reading: Into Africa: The Epic Adventures of Stanley and Livingstone, by the exceptional writer Martin Dugard. This book tells the true story of the last amazing African exploration of Dr. David Livingstone in the mid-nineteenth century, and is one of my all-time favorites. Livingstone was a Scotsman, physician and missionary, and considered the greatest explorer of his time. Following the upheaval and accusations between fellow British explorers Richard Burton and John Hanning Speake, Livingstone decides to take his last voyage to Africa at the age of 53 to find the true source of the Nile. He encounters hardships and disease, and at his advanced age, is unable to return. He awaits his fate at an African village. Enter Henry Morton Stanley, a shrewd journalist upstart who is out to make a name for himself. As brash and arrogant as Livingstone is humble and tolerant, he sets out to rescue Livingstone and earn world fame. Of course, you know the outcome when they meet: "Dr. Livingstone, I presume?" is one of the world's most famous questions. But the outcome is far from certain. Read this book for adventure, history and an insight into the minds of two amazing but very different men. Dugard has researched his subjects thoroughly, and most interesting are the descriptions of what these men endured, and how differently they perceive Africans and their respective missions. Four stars!

Labels: Africa, Bleeding Disorders Hotline, Insurance