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:
Well, not really. Yes, elections are Tuesday, and they are a nail biter. It’s too simple to say that if Romney wins, the Affordable Care Act will be repealed. And if Obama wins, the ACA and healthcare reform will continue. As Jim Romano of Patient Services, Inc. pointed out Saturday in Springfield, Massachusetts at our final Pulse on the Road symposia for 2012, no matter which candidate gets in office on Tuesday night, they will still need to contend with Congress.
Both men might face obstacles: Romney needs a majority in Congress and Obama faces a strong public undercurrent to revamp or repeal the Act. If Romney wins without a Republican majority in Congress, then the ACA and its Medicare provisions may continue to evolve.
Lisa Schmitt of New England Hemophilia Association with Laurie Kelley
But should Romney win on Tuesday with a GOP majority, he would have the political initiative and power to repeal the ACA. It’s possible Romney (and Paul Ryan) might push through Congress a structural overhaul of Medicare. With Obama, probably Medicare would be left as is.
Jim pointed out that the ACA was modeled after Mass. Governor Romney’s state heath care plan of 2006, which mandates that everyone in the Bay State have healthcare insurance, much as everyone must have car insurance to drive a car. The uninsured rate in Massachusetts dropped to 2%! But the jury is still weighing: In June 2011, the Boston Globe concluded that the healthcare overhaul “has, after five years, worked as well as or better than expected.” A study by the Beacon Hill Institute reported that the mandate was “responsible for a dramatic increase in health care spending.”
What will happen on Tuesday and its aftermath? Hard to say.
Just keep reading, review your own insurance policy carefully, stay in touch with your local
hemophilia organization and above all, VOTE on Tuesday! No matter what happens, we will
always need to keep advocating for our bleeding disorders community.
It was a gorgeous and warm fall day at the Rocky Gap Resort in Flintston, MD where Pulse on the Road (POTR) stopped to give the Hemophilia Foundation of Maryland its insurance seminar. About 28 families with bleeding disorders drove a long way to assemble for the weekend of fun. I had no idea Maryland, a little bit of land on the map, was so expansive and green. Zoraida and I passed farms and rolling hills under blue skies.
Emma Miller, executive director, and her capable team had everything and everyone organized and the weekend unfolded without a hitch!
Laurie Kelley presenting about insurance
POTR is focused on empowering patients with bleeding disorders to handle insurance issues and learn about the Affordable Care Act. Basically, we’re trying to wake everyone up to some major changes that could be taking place. So much can change, given that we face elections next month, and many states are suing to repeal the ACA.
With speakers Michelle Rice of NHF, Kelly Fitzgerald of PSI, Tom Larmondra of Baxter Healthcare Corporation, which sponsors POTR, and Kim Winship, LSW at Johns Hopkins University, we were well covered with experts!
Kelly Fitzgerald of PSI, Kim Winship, LSW, Michelle Rice of NHF, Tom Larmondra of Baxter, Laurie Kelley
My short talk was on preparing to choose a healthcare plan, which is important to know as we will soon have “state exchanges,” websites where people can go to select the healthcare plan that us best for them. They will need this tool as the federal government will mandate that everyone have health insurance.
Quickly and simply, I pointed out that it’s good to ask these questions in particular:
•Is my factor covered?
•Is it covered under the major medical or pharmacy benefit?
•Do I have a choice of more than one pharmacy provider?
•Is my HTC in network?
•Do I need a referral to see a specialist?
•What services require prior authorization?
•Is durable medical equipment covered?
Michelle as always captures everyone’s attention with the NHF Insurance Toolkit. Audience members were asked to crunch numbers and calculate “John Doe’s” choice of an HMO or PPO plan, based on his history of medical usage last year. Very clever and audiences love this! I saw everyone crunching away and asking very good questions.
When asked if everyone learned something new today, every hand went up. A great sign that we made our mark, and hopefully, more people will come away enlightened about how to protect their health care plan, and keep more dollars in their wallets!
Thanks to Emma and her team, and to Baxter Healthcare Corporation for sponsoring Pulse on the Road
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