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Monday, April 22, 2013

Pulse on the Road in Alabama!


We just wrapped up a great weekend in Montgomery, Alabama, after a terrible week in Boston. Zoraida and I were lucky to have no problems at the airport, given the tight security, and arrived in sunny Montgomery Friday afternoon. We were 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.

And we were surprised by a lovely and patriotic display of fireworks right outside our hotel window that night!

Michelle Rice presents NHF's Toolkit
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!
Laurie Kelley and Michelle Rice
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.
Attendees work on the toolkit

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.

With friend Kelly Champagne
8.     What about Medicaid? What changes will happen there?
Brian Ward, president of the HBDA answered this one: Alabama is not currently managed Medicaid, but might be soon. Almost certain of it. 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.

9.     Can payers reject prophy on Medicaid managed care?
a.     Michelle: NHF hasn’t seen formularies yet or 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.
Laurie with Tricia, a mom with
a child with hemophilia
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.

Hemophilia Unveiled!








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 http://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. 















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