PEN’s Insurance Pulse

Medicare… Me?

Laurie Kelley October 23, 2022

Yup. This week I turn 65, and I am officially on Medicare! It makes turning 65 a joyous event. Really!

Switching healthcare policies over to Medicare was surprisingly easy. But partly this is due to my previous work on hemophilia and healthcare. Back in 2005, we were the ones to alert the community to the “Coming Storm” in insurance. We alerted the community that choice was going to start getting restricted; you would need to accept tiers of medicine, PBMs were going to dominate, and choice of factor may no longer exist. All this in the name of healthcare cost-cutting. And it all came to be.

We took our message out on the road, in a live-action form of our newsletter PEN’s Insurance Pulse, calling the workshops Pulse on the Road. We did this for 10 years. I must say that Michelle Rice, mother of two with hemophilia and formerly with the National Hemophilia foundation was our healthcare insurance guru, and taught me so much!

Glory days! Michelle Rice, Kelly Lynn Gonzalez and Laurie Kelley

And now I get to use it. Medicare is for anyone over age 65. It’s an entitlement program; you start contributing to it when you start working, kind of a forced saving plan. It’s made up of several parts. Part A is free of cost, but has limited healthcare coverage. It covers medically necessary inpatient hospital care (including rooms, meals, general nursing and drugs), skilled nursing facility care, some nursing home care (if following an inpatient hospital stay) and hospice care.

Part B is optional but I strongly urge everyone to get it; it doesn’t cost that much per month as an add on. It covers: medically necessary doctor services; outpatient medical care; durable medical equipment; some preventive care and other medically necessary services Part A doesn’t cover, such as ambulance services; cardiovascular, cancer and diabetes screenings; and laboratory services. Pretty important stuff, especially as you age.

Part D covers prescription drugs.

Our community is aging, which is good news! But people with hemophilia from previous generations, now in their 60s and 70s will have health issues, such as joint deterioration. It really pays to advocate, ask lots of questions and learn more about Medicare. You can enroll during the month you turn 65, but you should start researching it and apply for it three months before that. Go to https://www.medicare.gov/ to learn how to apply.

Until then, enjoy your youth! And stay on top of all insurance, Medicare or not.

Pulse on the Road: A day at the beach!

Laurie Kelley December 12, 2011

Myrtle Beach, that is, location of the final Pulse on the Road for 2011. I traveled to South Carolina to Hemophilia of South Carolina’s annual meeting and to present POTR, an interactive health insurance symposium sponsored by Baxter Healthcare Corporation.

What a wonderful hemophilia organization! No surprise there—almost as soon as you land in South Carolina, you feel a difference. A genuine warmth and friendliness, with southern hospitality, that you just don’t get in many northern states. South Carolinians really know how to make you feel at home.

And what a rapt audience. We presented from 9 am until noon, a long time to discuss health insurance, but the families were attentive, engaged and asked many questions. After a warm introduction from the elegant Ms. Vidalia McTeer, I launched into the history of the hemophilia community as relates to health insurance, especially why the Golden Age of having whatever you want—product choice, access to many providers, and limited interference from payers— is coming to a close. Some points were new to this community, such as the rise of PBMs—an important player, with the current attempt by Express Scripts to buy Accredo.

Next, Marvin Poole, senior manager of Reimbursement and State Advocacy, Baxter Healthcare, gave a review of common and important health insurance terms, such as “grandfathered” and “donut-hole.” These are must-knows now that healthcare reform is upon us.

Ruthlyn Noel, manager of Public Policy, National Hemophilia Foundation (NHF), gave the results of a joint survey by NHF and HFA, to assess what consumers know about health insurance and healthcare reform. The results overall are encouraging!

Then, Kelly Fitzgerald, associate director of Government Relations, Patient Services, Inc. (PSI, gave the keynote speech on healthcare reform—the Affordable Care Act (ACA). The big year is 2014, folks—know what’s happening then!

We spiced up the talk by offering a quiz at the end of each lecture, and offering $20 to whoever gave the right answer! And why not? This is all about teaching the community how to safeguard our precious dollars, our disposable income.

Three breakout sessions allowed families to sit in more intimate setting and learn more about Medicaid, Advocacy and Out of Pocket Costs. Jennifer Meldau, RN and Nurse Coordinator at Palmetto Health, the SC hemophilia treatment center, joined us to help give the audience more specific information about South Carolina Medicaid.

Finally, we all reconvened for the Community Forum, a Q&A. Questions focused on genetic transmission of blood disorders, Tricare, advice on young adults exiting their parents’ insurance, and the likelihood of ACA being repealed by the Supreme Court. Fantastic questions from a fantastic audience.

I was very fortunate to sit with a few families individually and hear about their struggles, challenges and even triumphs. James, Susie, Sandy, April… all unique but with a common theme of bleeding disorders. There’s only one HTC in South Carolina, so many parents use local healthcare services if it’s not a life threatening bleed. But most doctors don’t know much about hemophilia—parents can actually know more than the doctor about treatment! Many South Carolina families have learned on the spot, in the midst of a crisis, how to find their voice and speak up. I was really proud to hear so many stories of these true advocates.

The most amazing thing about South Carolina is that the chapter has been run for 40 years by Roberta and Vic Fisher, a dynamic duo, and is all volunteer! Kudos to Sue Martin and the Fishers, and their team for organizing one of their biggest annual meetings. I miss South Carolina already and look forward to returning again. I hope though not for insurance reform education—wishful thinking that our government will have a breakthrough.

(Photos: Kay Scott)

Great Book I Just Read
The Water is Wide by Pat Conroy

Conroy is one of my favorite writers. In this, his first book, he provides a memoir of his first year out of college in the late 1960s, teaching mostly illiterate black children on neglected Daufuskie Island (which he calls Wamacraw), off the coast of South Carolina. Idealistic, young, confident and white, he soon learns his students are mostly illiterate, don’t know what country they live in, who the president is or even how to write. Shocked, he throws himself into the job with gusto and humor, winning his suspicious students over. His writing is superb, and the story is captivating, funny, sad and marvelous. When he learns the kids have never been off the island, or celebrated Halloween, he orchestrates a wonderful sleepover on the mainland and a Halloween outing. He refuses to use the switch on the children, and encourages them to speak up and speak out. His unorthodox techniques and agenda get him reprimands, negative attention and roadblocks from the school system, where he sees territorialism, jealousy and hypocrisy. The children are caught between a culture of dependency, fear and submissiveness from their depressed surroundings and often alcoholic or abusive parents, and a school board more interested in keeping them repressed and isolated. Conroy stands out as their champion; he leaves his mark on these impoverished children, while also growing up himself, and learning the ways of their unique island culture, and an indifferent outside world. Five stars

POTR is Hot in San Antonio!

Laurie Kelley June 28, 2011

Insurance is still the hottest subject in bleeding disorders, and this past weekend in San Antonio really proved it. We had a great turn out for “Pulse on the Road,” our unique symposium, sponsored by Baxter Healthcare Corporation, that is completely devoted to educating patients about insurance reform. As guests of the Texas Central Hemophilia Association and Lone Star Chapter of NHF, we presented a three-hour symposium on Sunday, June 26, from 7 am to 10 am, to an audience of over 200 patients and their families.

The chapters did an excellent job of attracting patients and families to attend. With hundreds of family members and a fair amount of industry representatives, this was a stellar meeting. I loved seeing the children with hemophilia scampering about, or holding relay races in the hallways as part of the supervised kids’ programs. No joint problems anywhere!

While a nutritious, hot breakfast was served, I started the session Sunday morning with an overview of hemophilia’s history and how our unique history has been placed high on the radar screen of insurance companies and state governments. My talk was followed by Elizabeth Stoltz of Baxter Healthcare, who gave an Insurance 101 session; her talk covered common terms that all families will need to know to navigate healthcare reform. Then, Michelle Rice of NHF presented the results of a patient-focused survey from last fall, which tested to see how much bleeding disorder patients knew about their insurance and insurance reform. Results were encouraging, as high numbers knew that lifetime maximums were being eliminated and that dependents would be able to stay on their parents’ insurance until age 26.

Finally Jim Romano of Patient Services, Incorporated (PSI) gave the keynote about healthcare reform. Breaking down the many changes into digestible amounts, Jim covered how the new healthcare reform will help us, and what we need to monitor to ensure we continue to have access to the care we need.

To spice things up and keep our audience sharp at such an early hour, I asked the audience after each presenter a question, and whoever got the right answer won cash! The message: we are trying to educate to keep the cash in your wallets. If you don’t know much about your own insurance policy, you may overpay. If you don’t know how insurance reform will impact you, you may lose money. In these economic times, we want every family to preserve their hard-earned dollars. The “competition” added some fun to the topic of insurance and we had some sharp people in the audience!

Following the speakers we had three breakout sessions on Medicaid, Out of Pocket Costs and Advocacy. Everyone agreed that 45 minutes for break out was not enough. These interactive and informal gatherings proved the highlight of the meeting. Patients were able to ask questions about their personal situation with experts in their field. Jim Passamano, of Sufian & Passamano LLP, a lawyer specializing in chronic disorder and insurance, helped explain Medicaid changes to many families. Shannon Brown, a social worker from Texas, spelled out certain out of pocket costs that patients will need to monitor closely. And Michelle Rice of NHF presented a new personal tool to help families get a handle on comparing insurance plans.

Simultaneous translation into Spanish helped the many Spanish-speaking families understand how healthcare reform may impact them.
Patients truly appreciated the three-hour program and the chance to speak to insurance experts in bleeding disorders. “I would like to have attended all the [break out] sessions and not just one!” commented one attendee. “I’m very pleased at how much I learned and all the wonderful people I met!” exclaimed another. When asked if they learned something new, every hand in the room was raised!

Thanks to Luis and Shannon, executive directors of their chapters, and coordinators of the event, for inviting us, and to Baxter Healthcare Corporation for their sponsorship.

Visit our website (“Events”) to see where we take Pulse on the Road next!

Visit our website to download your complimentary copy of Pulse, our newsletter devoted to insurance reform for the bleeding disorder community.

Interesting Book I Just Read
Altitude Illness: Prevention & Treatment
Stephen-Bezruchka, MD
This is a small book, written to be taken while trekking on mid- to high-altitude mountains. I read most of it on one plane ride. It’s chock full of good information, and goes into great (and scary) detail of what can happen to you if you are not careful on the mountains. It’s very dry, terse, to the point, and may make you think twice about attempting the big ones. Too late for me! I am going to tackle Mt. Kilimanjaro in August. The strange thing about altitude sickness is you just never know who it will strike. Marathoners and top athletes, like Martina Navratilova, can get it, and 12 year olds with limited climbing experience may avoid it. You never know till you are there. Two stars.

Healthcare Reform in Action: Wisconsin

Laurie Kelley June 12, 2011

I spent the weekend in Wisconsin Dells, Wisconsin, at the Great Lakes Hemophilia Foundation annual meeting. On Saturday we presented “Pulse on the Road,” which brings our annual newsletter about healthcare insurance reform live to hemophilia families across the country.

We had a wonderful turnout: Karin Daniels and her team really deserve a round of applause for the hard work that went behind this!

We opened the morning with a look at how our hemophilia community has changed through the past 15 years concerning product, pricing and reimbursement, and how we stand now. Insurance companies, “payers,” once reluctant to touch hemophilia, though it was increasingly an expensive disorder to treat, eventually overcame hesitancy when the increase in healthcare costs forced both payers and state health programs to scrutinize hemophilia products.

Elizabeth Stoltz of Baxter presented “Insurance 101,” and reviewed key terms and concepts that everyone needs to know to navigate the new landscape of hemophilia healthcare reform.

Ruthlyn Noel, policy manager with the NHF, presented survey results from the 2010 patient survey about healthcare. The good news is that all our efforts to educate the public is working: between 80-90% of respondents knew that lifetime limits had been removed and that children can stay on their parents’ insurance plans until age 26.

Finally, Jim Romano of PSI presented Healthcare Reform, now called “The Affordable Care Act,” and how it will impact hemophilia. While most of the action starts in 2014, there are many things we all need to know to prepare for the many changes. Jim talked about the central issue, mandated insurance, and how the government will assist in getting coverage, from “exchanges” to state tax credits to expanding Medicaid.

After a short break we had three breaks out sessions, on advocacy, out-of-pocket costs, and Medicaid. Families really enjoyed the informal and one-to-one attention from the speakers.

Then we reconvened to have an open Q&A: this was a great tie for families to present their personal concerns or general questions. One question concerned hospitals: what do parents do when they bring their child in to the emergency room and are forced to buy the hospital factor? One father shared that his one hospital visit was $100,000! Clearly his factor was marked up 400% or higher. He received great advice about why this might happen, and how to prevent it from happening again.

After the program, families had more sessions by local speakers and HTC staff. After dinner, they had the opportunity to visit the water park. It was a wonderful weekend, filled with information and fun!

Great Book I Just Read
The Worlds of a Maasai Warrior by Tepilit Ole Saitoti
This fascinating book is told by a man who grew up in the 1960s as a Maasai, the tribe that dominates eastern Tanzania and Kenya. Nomads to this day, they live in tightly knit families, and family life focuses on the rearing of cows, as currency, as food source, as their future. The Maasai are known for their colorful red clothing, and are proud of their warriors, who are initiated into manhood by a circumcision ritual and ability to spear a lion in self-defense. Tepilit had a remarkable life: growing up on the African Serengeti in complete simplicity but at one with nature. When his father sends him to a Christian school to be educated, he is introduced to new universe, and his life becomes one vast adventure that eventually lands him in Hollywood and the central character in a National Geographic movie. The book beautifully describes Maasai life, and then will make you smile or laugh out loud with Tepilit’s charmingly naive descriptions of his first automobile ride, plane ride, and impression of New York City. I met a 20-year-old Maasai warrior last year in Kenya, and chatted with him about his life. He easily walks three days in the utterly dangerous savanna, armed with only a spear and knife. He told me, “Anything I need, the earth provides.” I have great respect for the Maasai and truly enjoyed this autobiography. Three stars.

Making Sense of Insurance Reform

Laurie Kelley October 25, 2010

PPACA—mean anything to you? It’s the new Patient Protection and Affordable Care Act, the historic health care reform bill that was signed into law earlier this year. It’s the thing that has the upcoming Congressional elections electrified. It has some calling Obama a socialist, others calling him a savior. Beyond the rhetoric, though, how does it or will it impact those with bleeding disorders? (Photo: Kaaren Zielinski)

That was the topic this weekend in McLean, Virginia, for the Hemophilia of the Capital Area’s annual meeting. We brought “Pulse On The Road” to the meeting: POTR is a two-hour symposium dedicated to explaining health care reform, and answering audience members’ questions.

We opened Saturday morning with a story from Kaaren Zielinski from New York City. Kaaren’s story was profiled in the 2008 edition of PEN’s Insurance Pulse. It was so compelling that we asked her to share it with the audience. She had faithfully read her insurance policy annually, but the one year she did not… it changed. Previously she had no cap and bought factor whenever she needed for her son Michael, who used quite a lot; that year, the policy changed, a cap was installed and they blew through it in no time. In fact, they hit their limit three times before the insurance company finally told her! Too late—she now had no insurance. Kaaren noted that while the new PPACA will no longer allow caps, to our benefit, we should still maintain a vigilant watch over our policies. No one knows quite how the Congressional chips will land in another week, or how insurers will react to the new law over time. Everyone must read their policy and keep current with it.

James Romano of Patient Services Inc. (PSI) then gave a great overview of the PPACA and what we can expect in the coming years as it is phased in. Listening to him, I realized that there is an overwhelming amount of things to know, and that audience members could probably use a short glossary of terms. We all would like to think that insurance problems will get easier with the new laws, but James assured us that this is just the beginning. Again, the message is we all need to be vigilant and read, ask questions and never become complacent.

Community Forum followed for the next hour. Joining us were: Mike Bradley, Vice President, Healthcare Economics and Reimbursement for Baxter BioScience; Kisa Carter, director, Public Policy at HFA; Ruthlyn Noel, director of public policy, NHF; Mary Jane Berry, social worker at Georgetown University Hospital; and Jim Romano. The audience asked all sorts of questions related to health care reform. One mother asked what was the difference between annual caps and lifetime caps—great question. Another asked about physical therapy—would this be limited under the new reform? Someone in the back asked about whether in retaliation insurers would look to limited brand of factor access, or maybe limit homecare options? After all, someone has to pay for this and insurers will attempt to shift costs and expenses away from themselves. This stirred a lively debate for the hour.

The questions gave the panel ideas for the next time we meet, which will be in 2011. We hope to bring six more Pulse On The Road events to various chapters.

We closed the meeting with a motivational talk by Andy Matthews, long time friend and colleague. He stressed the need for teens especially to get more involved in their healthcare insurance management, but also for everyone not to see hemophilia as anything but a gift, a gift that allows us to connect as people, a gift that allows us to put life in better perspective and to see that even the heath care concerns we have make us stronger, and better equipped for life’s challenges. And Andy would know, as his story is so compelling.

The overall message of the day? Keep reading and getting educated about insurance reform; never think that someone else will take care of you and inform you of any changes—you must proactively find out what changes are being made to your plan. And be grateful—no matter how worrisome the times may be, in America, we still have the best care on earth and remain the largest factor market. One thing we have more than anyone is factor, and people who are dedicated to keeping you informed about health care reform.

Thanks to Sandi Qualley and her team for allowing us to bring Pulse On The Road to her chapter; thanks to the speakers for sharing the day with us; and thanks to Baxter BioScience for funding this much-needed resource to our community.

Great Book I Read
To Kill a Mockingbird by Harper Lee.
I read this in one sitting on the plane to India last month and could not put it down. Unforgettable characters and a timeless story of childhood during a time of racism and poverty in the Great Depression. Many of you may have seen the movie, which is excellent, and completely faithful to the book. Jem and his sister Scout endure a small town’s racism during the 1930s as their father serves as defense attorney for a black man wrongly accused of a crime against a white woman. A parallel story emerges about a neighbor who never comes out of his house, and is the focus of ridicule and suspicion, even by the children. The lessons learned about how we treat each other when we think that being different means being menacing, and how belief in the goodness of human nature will eventually win. Four stars.