Pulse on the Road: Albany!

Laurie presents 

 We had a wonderful visit to Albany, to meet members of the New York Coalition of hemophilia organizations. Bob Graham, person with hemophilia, helped facilitate our invitation and arrival and welcomed us Sunday, March 10. It was a small gathering of families and some clinicians, who eagerly drank in all the insurance information we presented.

 Kelly Fitzgerald, associate director of government relations at Patient Services Inc. (PSI) gave everyone a 45-minute update on the Affordable Care Act. Key take-aways include:

• In 2014, everyone must have health insurance
• You may need to select your insurance in a “marketplace”
• You must read your insurance policy annually and carefully!

When is your open enrollment date?

I then gave a talk called “The Importance of Choosing a Healthcare Plan,” infused with humorous stories of my own son’s struggle with insurance (hint: good idea to have your insurance and medical mail forwarded from mom’s house to your place over a pizza shop!) and stressing that you must pay attention to open enrollment dates. Do you know yours??

Michelle Rice of NHF

Michelle Rice, public policy director of NHF, then gave her acclaimed one hour workshop on the NHF Insurance Toolkit. We passed out workbooks and calculators and I was so impressed by the audience’s dedication! Even the teens were busy crunching numbers to see how “John Doe”‘s medical expenses add up when comparing two plans.

Zoraida Rosado, who pulled
everything together!

And finally, we had a 30 minute expert panel, so the audience could ask questions of the speakers. I learned a lot. One nurse in the audience offered this excellent piece of advice: when using medical services, instead of asking “Do you accept this insurance?” instead ask, “Are you in network with this insurance plan”? This pointed question could save you so many hassles, time and paperwork!

Teens were even crunching numbers!

Families engaged in NHF’s Insurance Toolkit

Thanks to Bob Graham, the New York Coalition, my team, our guest speakers, and all the families who attended. Deepest gratitude to Baxter Healthcare Corporation for sponsoring Pulse on the Road. For more information about health care reform, visit:

•www.healthcare.gov
•www.patientservicesinc.org
•www.hemophilia.org
•www.hemophiliafed.org 

A Father’s Pursuit of Justice

After spending three incredible, wonderful days in Washington DC with our amazing community, it seems the right time to mention this unique book: Vial 023: A Father’s Pursuit
of Justice
by Gary William Cross.

This is a poignant tale of parents who struggle raising a wonderful boy with hemophilia in the 1970s, only to learn later he has contract HIV. When their son eventually dies, the Crosses join forces with other advocates and activists to sue the pharmaceutical companies for negligence, and bring some sort of peace and truce to a fractured and angry community.

There have been many books written about the HIV scandal, most notably Blood by Douglas Starr, and And the Band Played On by Randy Shilts. There have been memoirs of loved ones who have died. But to date no one has told the story of how a select few in the hemophilia community brought down the rigid armor of big pharma, against all odds, while still mourning the loss of their sons, husbands and relatives.

The story is a memorial in many ways to Brad Cross, born on April 30, 1975 in Baton Rouge, Louisiana. Gary, his father, knew that wife Karen and her two sisters were carriers of
hemophilia.

Because of this, the parents suspected, and it was confirmed right away, that Brad had hemophilia. He was not circumcised but his heel prick bled. He was first infused with factor VIII concentrate at the six
months for a bilateral hernia surgery. By age 5, hemophilia seemed under control. The Crosses were excellent parents: Brad received treatment at the hemophilia treatment center at
Tulane University in New Orleans. Both parents worked to ensure two health insurance policies to cover mounting costs. The
family belonged to the Louisiana chapter of the
National Hemophilia Foundation.

When HIV was reported in certain groups of people, and suspected to be in the blood supply in 1985, Brad asked his HTC
hematologist point-blank whether he had AIDS. His physician did not answer, but later
informed Gary that Brad was HIV positive. The HTC had anonymously tested Brad’s
blood, and labeled the vial “Vial 023.” As the disease became full blown, Brad suffered seizures
and a gradual mental deterioration, losing
his speech and his ability to walk.

The narrative of the parents’ love for their son is gripping and evocative. It is a powerful testament to their love for Brad as well as their desire to not have others hurt that the Crosses helped to
initiate in 1991 a class-action lawsuit against four pharmaceutical providers
of the factor concentrate–Alpha, Armour, Baxter, and Bayer–a legal process
that would last 10 years and eventually include 124 families. The Crosses lost almost everything, including hope, but stayed the course, and in the end were victorious.

But not with Brad; he died at home
on April 16, 1993 just days short of his eighteenth birthday. The pharmaceutical
companies offered compensation of $100,000 to each HIV-infected individual with
hemophilia, but some opted for the class-action suit. Gary, a man with high principles, finally received personal apologies from the pharmaceutical CEOs. 

As the mother of a child with hemophilia who has dedicated her life to helping this community, I believe this is a vital story to the hemophilia community’s unique and tragic past, and is a model of advocacy: what one man can do to change the world. Everyone should read it.

As an editor and author I would be remiss if I didn’t, however, point out some problems with the book itself. Expect an amazing story; don’t expect great writing. The text suffers from lack of good editing. There are typos, misspellings of names, and incorrect or incomplete medical and scientific terms. Some of the phrases are quaint and a throw-back to the 1950s. Some will make you cringe as politically or culturally inappropriate. Nothing is documented or footnoted; on page 114 Gary asserts that the four pharmaceuticals never spoke with each other as they were trying to control market share, perhaps not realizing that legally these companies cannot speak with one another due to anti-trust laws.

I recommend trying to overlook these and focus on the story. It is remarkable and Gary Cross is a modern day hero, as are the men and women who fought beside him, many of whom were at Washington Days last week, still fighting the good fight for the future of our children with bleeding disorders.

Gary and his wife, now
retired, continue to serve their community as volunteers and fund-raisers. You can meet them at hemophilia events. Gary serves as chair of the board of Patient Services, Inc. (PSI), which provides insurance premium assistance to families with chronic disorders.

The book is available at Amazon.com. 151 pages, published by Kudu. 2012

A NEW Co-Pay/Co-Insurance Assistance Program

It’s Superbowl Sunday, but take time to read this important press release: while it’s meant only for Kogenate FS users, remember that almost all manufacturers of blood-clotting products have some kind of assistance program. I’ll post them as I hear of them, but don’t hesitate to call your manufacturer to find out what they are doing to help you with insurance!
PSI AND BAYER HEALTHCARE
INTRODUCE A CO-PAY/CO-INSURANCE
ASSISTANCE PROGRAM
Patient Services, Inc. (PSI)
and Bayer HealthCare are pleased to announce the Kogenate® FS
Co-pay/Co-Insurance Assistance Pilot Program. The pilot program is funded by
Bayer to help qualified Kogenate® FS patients with their out-of-pocket
payments.
What is offered through the
pilot program?
PSI will administer and
determine eligibility for the Program to help Kogenate® FS patients afford
their copay/coinsurance expenses.
Patients are qualified to
apply for the pilot program* if they:
· have Hemophilia A.
· meet specific financial criteria for enrollment.
· currently have private
health insurance.
. Who is not eligible for
assistance?
·
Patients on public health insurance, including (but is not limited to) patients insured through Medicare,
Medicaid, TriCare, DOD plans, PCIP programs, and High Risk Plans associated
with a PCIP.
· Patients enrolled in Bayer
Assistance Programs.
Once approved…
·
Financial assistance may be provided for up to 12 months or as long as funding
is available. Funds administered by PSI can only be used towards a patient’s
co-pay/co-insurance expenses for Bayer’s Kogenate® FS.
·
Financial assistance will be based on each patient’s specific health plan
design and annual income, subject to yearly and per payment maximums.
· As a condition of payment,
patients and pharmacies must comply with all contractual obligations made with
Third-Party Payers and insurance companies, and must provide notice of any
benefits received and the value of this program to all payers as required by
law, contract, or otherwise.
For inquiries regarding the Kogenate® FS Co-pay/Co-Insurance Assistance
Pilot Program, please contact Bayer’s Factor Solutions at 1-800-288-8374.
Please remember that applications will be processed and patients will be
enrolled on a first-come, first-served basis. Program may be cancelled or
changed at any time without notice.
Interesting Book I Just Read
Ice Balloon: S. A. Andree and the Heroic Age of Arctic Exploration by Alec Wilkinson [Kindle]
The story of S. A. Andrée, the visionary Swedish aeronaut who, in 1897, during the age of Arctic exploration, convinced donors to fund an attempt to be the first to discover the North Pole by flying to it in a hydrogen balloon. The book is an easy read, and covers the history of Arctic exploration, failed attempts to reach the pole, a glimpse into Andrée’s past and makeup, his reasons for being obsessed with attempting this, despite many misgivings by experts. If you are new to readings about polar exploration you will love this adventure book. Learning about balloons, how they are handled and how they stocked it for a long haul trip was fascinating! But… the book is a mixed bag. I have been studying polar exploration for over a decade and have an extensive collection of biographies and books. So for me, this book was a bit fluffy: the writing was good, but there was a lot of filler. Six chapters alone were spent on an unrelated story about the Greeley expedition, I guess just to show how tough it can be in the Arctic? But it was disconnected to the rest of the story, and you’d be better off reading Ghosts of Cape Sabine, which is superb reading about the Greeley expedition (which is now legendary). I am glad Andrée’s story was told, but honestly, there isn’t much to his story. He went up, he came down, and his diaries, terse and factual, left little information on what happened. A lot of the book consists on just quoting directly from the diaries. This books gets mixed reviews on Amazon.com. It’s definitely worth reading, but it could have been better. Two/five stars.

In Praise of PSI

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)

Passing of a Friend to Hemophilia

It is with great regret that I announce the death of Randi Paltrow, 59, Director of National Relations at Patient Services, Inc. (PSI), last Saturday. As many of you may know, Randi was devoted to the hemophilia community. She served as executive director of the Northern Ohio Chapter before joining friend Dana Kuhn’s organization, PSI. She dedicated herself to the important issues of insurance reform, which is wreaking havoc for many families with bleeding disorders. Although I had known Randi for years, I really got to know her better just this past year, as we spent more time together at several functions. Randi, who is the aunt of actress Gywneth Paltrow, downplayed her celebrity status almost as well as she downplayed her cancer. She was energetic, bursting with ideas, and determined to not let her illness get her down. With her typical can-do attitude, she always made you believe that she would overcome any obstacle. I hope our community adopts that attitude as her legacy, as we say good-bye to a true friend.

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