Pulse on the Road

Pittsburgh: Pulse on the Road

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.

Laurie Kelley with Delores J, and children

Pulse on the Road in Alabama!

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:

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!
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.
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!
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.
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.
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.
If you have private insurance, can you still use the marketplace?
a.     Not if you have a large employer. As of now, no.
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
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
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.

Pulse on the Road: Albany!

When is your open enrollment date?

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 Healthcare: Down to the Wire?

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.

Pulse on the Road Stops in Maryland

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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