Switching Time

Insurance challenges was the topic of my talk in Pleasanton, California at a Herndon Pharmacy sponsored event Saturday evening. We had a great turn out with about 50+ patients and parents attending. We all enjoyed a delicious dinner at the Pleasanton Hilton, followed by my presentation on “The Current Storm.” The hour-long presentation covers what’s happening with hemophilia reimbursement, why it’s happening, how it all got started, and what families shoudl do to protect their insurance and choice. California is facing two major challenges: sudden switching of homecare companies by insurance companies, and a 10% reduction across the board on reimbursement by MediCal. Both measures hurt factor providers (340Bs and homecare) and parents are not very happy with the home care switching. For many parents, they don’t even know what questions to ask. Insurance is complex, ever changing… and necessary.

It was really great to meet some new parents like Christina and Colleen, patients like Art and Stanley, and families I’ve known for a long time, like Vicky and Burt, and Betty. All the attendees really enjoyed meeting each other: everyone knew somebody and it was like a big reunion. You could see the comraderie and joy everyone was feeling. Before everyone left we all sang happy birthday to Mark Helm, president of Herndon, who just had his 50th birthday.

Thanks to Zuiho Taniguchi of Herndon Pharmacy for inviting me and handling all the logistics, and to Mark Helm, for sponsoring this enjoyable event. And please see for more information on Herndon Pharmacy, a contributor of factor to Project SHARE for patients in the developing world, and provider of hemophilia services in the US.

(Photos: 1) Colleen, Laurie, Christina 2) Brochure 

Book I Just Read

Enough About You, Let’s Talk About Me: How to Recognize and Manage the Narcissists in Your Life
Les Carter

We all know people who love to talk about themselves. And we all know bores. But these are not necessarily people with bona fide narcissistic personality disorder (NPD). Carter explains very simply and easily what sets these people apart from people who just love talking about themselves. People with NPD can make your life miserable especially if you are married to them, have one as a sibling or parent, or as a boss. They lack the ability to be empathic and are notoriously difficult if not impossible to get into therapy or even get to see your side of a situation. Being with them is positively exhausting and narcissists are great at making you feel guilty and responsible for all that is wrong in a relationship. Carter offers excellent scenarios and great tips for dealing with those with NPD. Carter has a fundamentalist Christian background, and I did not like or agree with his view of children, despite that he is a popular author and therapist, and you may not agree with his linking original sin to this disorder. I also found the book very light, mostly anecdotal, with dialogues from his sessions with patients. This is a good book if you are new to psychology or narcissism. Two out of four stars.

Don’t Quit Your Day Job

I had a nice visit this week from a young man with hemophilia named Walter.  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, 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 Walter did stop by. He quit his job. Walter, Walter! What were you thinking? I wailed. Now he has no insurance and no way to pay for factor. No unemployment checks, nothing. Walter also didn’t know what to do. He had never really been connected to the community.

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… Walt 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, Walt 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, Walt 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.

Homecare Switching Heats Up

So what is going on out there? I have gotten more emails this past week about home care switching than ever.

Tom wrote in to ask if all Anthem Blue Cross patients with hemophilia will be required to use Precision Rx as their factor provider? He is livid, if this is true. Another mom wrote in to report that she is hearing that Anthem in Ohio is forcing a switch in home care companies. She heard that Anthem’s doses may be +2%, not the current industry of dose +10%. She is concerned that this means fiddling around with the vial sizes and number of vials we get.

Still another mom, employed by a home care company herself (so she buys factor from her employer) is being forced to switch to another home care company–a competitor!– that she doesn’t like and has not heard good things about. She is very concerned. I would be too: if my son is a source of revenue for my employer and then no longer supplies revenues, will my job be on the line? A lot of parents and patients are employed in the homecare industry.

I had a long conversation with Bob Robinson, the executive director of the Illinois chapter, and he tells me now that Blue Cross Blue Shield is doing the same thing in their state. This trend is gaining speed, and this will be happening more and more. Bob and I talked about how our community is going to have to start accepting that some change is inevitable and that we are going to have to learn to compromise. There is just no way we can have “our way” any more. Most disturbing is that the insurance companies are setting up their own in-house specialty pharmacies. So they are paying for factor and getting the profits at the same time. Can they can charge whatever they want? Who is monitoring this practice?

It seems shocking, but you know, this at first seemed like much more of a market correction than an out-of-the-blue change. Health costs have risen astronomically, so payers are naturally going to do something to lower costs, as long as this does not put the patients in danger. This is what managed care is all about, and it is here to stay, whether we like it or not. Best we can do immediately is to document everything, carefully, every call, every EOB, every charge. We do pay good money, but the payers can simply say “Then go find another plan.” Harsh reality but it is the reality.

But the scary part is this: it’s not just about lowering health care costs, but control. Insurers are definitely wrestling control of our health care management. Competition is dwindling. When insurers have their own in-house specialty pharmacy (to allegedly control costs) and see the profits rolling in, who will authorize cost control then? They will be fixing the reimbursement price, and reimbursing themselves. Conflict of interest? Big time. The questions become: what is competition, how is it defined and what is fair?

I’ve been predicting this trend for three years now, since the November issue of PEN in 2004. If you’ve been reading our work this should not be such a surprise. Only the speed at which it is happening is quickening. Keep those letters and emails coming to us; let us know your insurance and home care switching story so we can pass it along to NHF, HFA… we are all working to preserve care and control, at fair cost.

Insurance Check Up Time

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!

SCHIP Restrictions, Record Number of Americans Uninsured

NHF has sent an important email appeal to all its constituents, which includes anyone with a child with a chronic disorder like hemophilia. In a nutshell, the Bush Administration is trying to prohibit an expansion of the SCHIP, which it feels would encourage families to abandon private insurance in favor of state/federal funded insurance. NHF disagrees with this assessment and is asking constituents to consider emailing the White House directly to oppose a veto. Here’s the gist of NHF’s email:

“Bush Administration Blocks Expanded Healthcare Coverage for Children: Take Action Now
Prior to going into month-long recesses, both the House and Senate approved bills reauthorizing the State Children’s Health Insurance Program (SCHIP), and allowing more states to expand eligibility for the program to more children in families above the federal poverty level.  However, the Bush Administration, through the federal Center for Medicaid and State Operations, has instituted new policies that would severely restrict the ability of states to expand the SCHIP program, covering more children. In addition, these new restrictions may threaten the existing coverage that children in many states are already receiving. NHF has drafted a sample letter to President Bush expressing disagreement with this action and asking him to rescind it. You can help make a difference by personalizing the letter below with your own story and sending it to President Bush today.

Click here to view and personalize the letter, and send it to President Bush now.”

When I read this, I found this to be the most disturbing part of the news (taken from NHF’s website): “Ironically, the Congressional Budget Office reported that President Bush’s budget did not include enough funding for the SCHIP program to cover the children who are enrolled now. Therefore, it will not be able to cover those who are eligible but not yet enrolled, and/or those who might be eligible under an expanded program.” Ouch; I know personally a lot of families with hemophilia out there truly struggling.

But I encourage readers to investigate what’s up behind the headlines. For instance, I just read in the news wires today that 2 million more Americans are going without health insurance to bring the total to 47 million Americans without health insurance (making it seem even more perilous). Along with the news about SCHIP, this seems outrageous. But after digging a little, I read that these numbers may be misleading. The 47 million also includes illegal aliens and the temporarily unemployed. And yet, if you think about it, the current housing crisis will no doubt affect the wealth and employment of many, leaving more Americans than ever dependent on the government for health coverage. So, it’s not a great time to cut health care budgets, even though we’ve been saying to prepare for this for some time.

But don’t just jump on the bandwagon and fire off a message to the White House without doing your homework. Read the text of the issue, and know what the argument is about. See if you agree with it. NHF has put an explanation of what the issue is on its web site and you can check through the internet. ( And if you are a family facing insurance difficulties, please call NHF (800-42-HANDI), or even call us and we can help direct you to someone who can help.

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