A gloriously sunny day greeted us in Pittsburgh for our fourth Pulse on the Road in 2013, on Saturday, June 15. Greeted by Alison Yazer, executive director for the Western Pennsylvania Chapter of NHF, about 18 families attended the event. Speakers Michelle Rice, public policy director of NHF, and Ruthlyn Noel, senior reimbursement specialist at Baxter Healthcare Corporation, were on hand to share their knowledge of current health care reform.
Pennsylvania has had a lot of activity regarding the Affordable Care Act, and the audience was itching to ask questions. Ruthlyn presented a one hour talk on the ACA; I followed with a short presentation on the importance of choosing a healthcare plan; Michelle then presented her highly regarded workshop, in which participants actually compare plans and crunch numbers and in the end, tell us which plan is best for their budget!
The audience peppered the speakers will excellent questions; this could be one of our liveliest audiences yet! I think there was a lot of deep concern about the ability of the government to take over aspects of our health care. Some of the highlights of the Q&A:
• The Federal government will run the Marketplace for individuals, not the state of PA
(The Marketplace, formerly known as exchanges, is a web-based program that allows people to
compare many different healthcare plans based on benefits and costs to assess the best one for each person)
Laurie Kelley and Alison Yazer
• If you make $25,000 a year, subsidies will be almost 100%
• You don’t have to be uninsured to take advantage of the Marketplace
• If you work for a large employer, you can’t drop your plan and go to the Marketplace; if you do, you won’t get any subsidies
• Insurance companies know who you are! Don’t ignore your insurance issues just because you don’t want them to know you have a bleeding disorder. Believe us, they know! They know your product, whether you have an inhibitor, your severity level.
• Without the Marketplace, you could waste hours trying to compare plans (Aetna has over 200 plans, for example!
• Coverage is not the same year to year, even with the same insurance carrier. Read you policy book annually! • We often look at cost only of a plan, but also look at what you get for the cost, the benefits
• Sometimes factor covered under Pharmacy benefits looks more affordable, but more and more we are seeing specialty tiers… instead of a flat rate copay (like $50), you could instead pay a percentage of your drug, like 10%. 10% of factor is unaffordable!
• NHF is supporting a bill in Congress to do away with specialty tiers.
Go NHF! Thanks to everyone who attended our event!! And thanks to Baxter for sponsoring the entire event, and to the Western Penn Chapter for hosting this.
We just wrapped up a great weekend in Montgomery, Alabama, after a terrible week in Boston. I was lucky to have no problems at the airport, given the tight security, and arrived in sunny Montgomery Friday afternoon. I was greeted by a wonderful display at the Renaissance Hotel: streamers of green and purple, big Mardi Gras-style mask, and the warm hospitality of the Hemophilia and Bleeding Disorders of Alabama staff. The theme: Unveiled… Our Future Revealed, a theme the HBDA will use all year long as they raise public awareness of this rare and mysterious thing called hemophilia.
Michelle Rice and Laurie Kelley
And I was surprised by a lovely and patriotic display of fireworks right outside my hotel window that night!
On Saturday morning, while the kids were organized to be bussed to the local zoo, we adults visited another kind of zoo—the world of health care reform! Our session kicked off with a full audience of about 100 people with hemophilia and their families. “Pulse on the Road” is a three-hour insurance symposium that
brings our newsletter Pulse to life.
This year we will visit six states; we’ve already been to New York for Albany Days and Colorado for the annual meeting.
Our guest speakers were Michelle Rice, public policy director at NHF, of course, and Marvin Poole, a senior reimbursement manage with Baxter Healthcare, sponsor
of this symposium.
Laurie Kelley with Vicky Jackson
Marvin opened with a review of the Affordable Care Act (ACA) which led to an explosion of questions. The audience, attentive and curious, was hungry was answers. I jotted down questions as they came:
1. Will your employer be able to deny you due to hemophilia?
a. Marvin replied no. Under the ACA, no pre-existing condition exclusions are allowed.
This is one of the beauties of the legislation!
2. Will the “navigators” (the helpers who will guide us using the new exchanges, now called marketplace, websites where we can buy insurance) be neutral? Or will they work with the payers? Whose side
are they on?
a. Michelle noted that they are not on
anyone’s side. They are trained to be neutral, and are there to help us
evaluate the cost versus the benefits of any given plan, to help us decide
which is best for us.
3. What are the essential health benefits?
a. Michelle noted that certain packages called essential health benefits (EHB) must be included in all insurance plans. These are basic services that must be covered. But… the definition of what these things are may differ! For
example, ER coverage when there is an emergency. What’s the definition of an
emergency? For Michelle it might be an ear infection as she travels a lot. But for a payer, it might be loss of life or limb!
4. Are payers going to cap insurance for premiums? I’m paying $900 a month!
a. Marvin answered that there will be a cap on copays, but premiums will be expected to rise.
5. Explain what the marketplace is.
a. Michelle replied that these are web portals (websites) created by the states that allow people to “shop” on line
for insurance plans. You can plug in your requirements and needs, and the system will bring up various plans for you to compare. These plans will be denoted by a cost-sharing scheme: Bronze, Silver, Gold, and Platinum. You can choose one of these plans based on how much you are willing to pay. For example, a Bronze plan might be 60/40; you pay 40%, with lower monthly premiums. A Platinum might be 90/10, with high premiums but lower out of pocket costs after that.
But Michelle noted that the maximum out-of-pocket (OOP) costs to us, consumers, for health insurance through the marketplace
regardless of the plan are $6,200 for an individual and $12,000 for a family. What counts toward it? Copays, coinsurance, deductibles related to EHB.
6. What about tiers? If you have a Platinum with 90/10 cost sharing, even 10% of the cost of factor is outrageous.
a. Michelle replied that our understanding is that your OOP, even with tiers, goes toward that OOP max in the marketplace.
7. If you have private insurance, can you still use the marketplace?
a. Not if you have a large employer. As of now, no.
8. What about Medicaid? What changes will happen there?
Brian Ward, president of the HBDA said Alabama is not currently managed Medicaid, but might be soon. Managed Medicaid is when it is managed by a payer like Blue Cross Blue Shield (BCBS) or Aetna, for example. It may have a PDL or formulary which lists the drugs covered by your plan (know this one, for factor!). Michelle said it is very much like a Medicaid HMO: it uses a Primary Care Physician (PCP), and in network hospitals and physicians. Coverage will be the same for services but the networks will be different.
With friend Kelly Champagne
9. Can payers reject prophy on Medicaid managed care?
a. Michelle: NHF hasn’t seen formularies yet r restricted prophy. They will restrict factor provider (meaning specialty
pharmacy). They seem to “get” prophy for kids, not so much for adults and may argue that coverage.
b. Michelle also replied that most changes in Medicaid are not related to ACA. Managed care has been with us for years, and now Medicaid is trying to use it for more groups like hemophilia. Sometimes managed care is better for us all, but the biggest problem for us all is coverage for factor.
One mom lamented, “My son uses $30,000 a month and he’s only 2 year old. I can’t have caps!” Brian then stressed: tell us your stories, your struggles, because we will then tell Michelle at NHF and NHF will can set policy.
After this lively session, I then spoke for 20 minutes about the importance of being able to choose your health care plan, followed by Michelle Rice’s excellent hands-on seminar about NHF’s toolkit, which has attendees crunch through numbers
to calculate the different between two plans for “John Doe,” who must choose between two plans. Wow, the numbers were flying, and attendees quickly calculated the costs. This is a great exercise for families who feel intimidated by insurance policies and questioning charges.
Laurie with Tricia, a mom with a child with hemophilia
It was an engaging, excellent three hours, filled with inquisitive audience members (every speaker’s dream!), and much information sharing. It is a lot to absorb but family members came away with new tools, new ideas and more solidarity.
Thanks to the Hemophilia and Bleeding Disorders of Alabama for inviting us, to Vicky Jackson, executive director extraordinaire and her team, and Brian Ward, president. And to Baxter Healthcare for sponsoring Pulse on the Road and to all the companies who supported this wonderful weekend!
For more information on insurance, download Pulse on the Road for free at https://www.kelleycom.com/newsletters.html.
Great Book I Just Read
Angela’s
Ashes by Frank McCourt
Poignant, page-turning and superbly written story, based on the author’s life, of growing up impoverished in Ireland during World War II. If you’re Irish, you will especially love the historical references, phrases and cultural mind-sets, things we all heard growing up. But mostly this is a book about how a child thinks and perceives his world when he is trying to survive harsh poverty, hunger, loss of siblings, alcoholism, an absentee father and the brutal reception he receives from most adults, including those of the Catholic church. Five/five stars.
The Colorado Chapter of the National Hemophilia Foundation is flourishing under the leadership of Amy Board, executive director and her team. We had an excellent turnout for our Pulse on the Road insurance symposium yesterday, presented at the Colorado Chapter’s Educational Dayz! 2013.
Friday night started with a fun ice-breaker, dinner and then a great presentation in joint care by my friend Jeff Kallberg, a physical therapist who has hemophilia. This was followed by a carnival in the ballroom. There were lots of children and their families attending, so the whole event was kid-friendly, of course!
On Saturday, I was joined by Michelle Rice, policy director of NHF and Frank Quintieri of Baxter Healthcare to present Pulse on the Road. Frank gave an overview of the Affordable Care Act (ACA). In a quick review he stated that the ACA, passed in 2010:
Lifts lifetime & annual caps
Dependents stay on parents’ plan till age 26
Eliminates pre-existing condition exclusions
Creates “marketplaces”
Allows states to expand Medicaid eligibility
Frank explained each of these changes in detail, all of which was good news for people with chronic disorders. The audience had excellent questions in response to his talk, from how does the ACA affect the self-insured plans, to what happens when a child with hemophilia turns 26 and then doesn’t have insurance. We all agreed that this was one of our most inquisitive audiences to date!
I spoke after a break about the importance of choosing a healthcare plan: you need to know terms used by payers, where factor is charged on your plan (major medical or pharmacy?), and what are the costs versus the benefits of the plan? Beware of what is covered in–network versus out-of-network. And most of all, know when your open enrollment period is—the time when your employer chooses a new plan. We all had a great laugh when audience member Maryann called it open season; “Like deer hunting?” I replied.
Michelle Rice presented NHF’s excellent Insurance Toolkit, designed to walk you through a hypothetical patient who wants to compare two plans. It’s detailed, challenging and incredibly useful. If you can do this Toolkit, you are ready to compare plans under the ACA through the marketplaces. The audience dug right in and got to work, using the calculators we supplied. And right away people caught on that there was a trick question when it came to plugging factor costs in! Impressive!
In summary, we reiterated that:
Everyone must have health care coverage in 2014
You may need to select your coverage in a marketplace
You must read your insurance policy annually
Hats off to Amy and her team for an excellent weekend, and for being such gracious hosts for us. We’re excited to see Colorado flourishing!
No book review this time. Colorado patient Chris Bombardier, who summited Mt. Aconcagua in Argentina in February (first person with hemophilia ever to do this!) and girlfriend Jessica Carter kindly spent the day with me Sunday to take me hiking and caving. The original plan was to hike 14,000 ft Pike’s Peak but conditions were very bad—high winds and lots of snow. But we had a great day hiking the Gardens of the Gods, and later visiting the Cave of the Winds. Beautiful rock formations under ground, a mile of stunning beauty including stalactites, stalagmites, columns, cave popcorn, cave bacon and soda straws. Colorado has tremendous natural beauty: go see it if you can!
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!
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.
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:
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.
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• We often look at cost only of a plan, but also look at what you get for the cost, the benefits
