ACA

Pulse on the Road in Texas!

Laurie Kelley August 24, 2014
Austin, Texas was the location of our third Pulse on the Road in 2014. Temperatures spiking 100° didn’t stop a huge turnout for the Texas
Bleeding Disorders Conference, co-hosted by the Lone Star Chapter of NHF and the Texas Central Chapter of NHF. Melissa Compton, mother extraordinaire of a child with hemophilia (and a compassionate supporter of Save One Life) emceed the event and introduced our team on Sunday morning at 8 am sharp, following a delicious buffet breakfast. About 400 people attended the two-hour session, one of our highest numbers yet!
I changed up the presentations a bit and first delved into why did the Affordable Care Act (ACA) come to be? With a few stats, I showed that skyrocketing medical costs, particularly in specialty drugs (which factor is), was straining the state budgets; it was only a matter of time before private insurers caught on. Looking to cut costs, insurers turned to increasing prior authorizations, formularies, decreasing choice of factor
provider, and more.
After setting that stage, Tom Larmondra of Baxter Healthcare reviewed the ACA, particularly the benefits to those with bleeding disorders. He reviewed the fine print, exclusions, and most important, the Marketplace: what is it, how does it work, and how to use it.
Back to me: I next reviewed the importance of choosing a healthcare plan, as many people may need to go on line to choose one. Comparing it to car insurance, which we are all more familiar with, we reviewed costs versus benefits, and in particular which costs to watch out for.
The goal? Learning the main things to consider when you compare healthcare plans so you do not underestimate your healthcare annual budget. We want you to save your hard earned income!
Last, we welcomed Michelle Rice, Vice president, Public Policy and Stakeholder Relations, National Hemophilia Foundation and Marla Feinstein, Policy Analyst, NHF. Their topic, Appeals and Grievances—Making Your Case, covered what to do when insurers reject your claims. Using the fun and sophisticated ARS devices, audience members cast their votes for the correct answers to a series of educational questions, while tunes played in the background (Ghostbusters?).
The event scored rave reviews from the looks of the 60+ evaluations turned in. Our thanks to Baxter Healthcare, for providing the funding for all the Pulse on the Roads, now in our 5th year!
We’re done for the year but look forward to visiting you and bringing up to date information about insurance reform to your state!
Please check www.kelleycom.com by December to see where we will be in 2015!
Great Book I Just Read
 
Midnight Express [Kindle]
Billy Hayes &
William Hoffer
Much more than a survival book, it’s
the true story about an American enduring a harsh and dehumanizing imprisonment
in a Turkish jail in the 1970s. A gripping, unforgiving and frightening tale,
Hayes is incarcerated while trying to smuggle hash out of Turkey. Hayes ensured
five years of mind and physical torture, a labyrinth court system, watching the
anguish of his parents as he deteriorates and becomes a shadow of himself, until
his incredible escape. Hayes accepts that he broke the law and deserved
punishment, but it highlights the brutality apparent in the penal systems of
other countries, and the injustice of completing his initial sentence and
having the system overturn it and be given life. His portrayal of life in
prison is sobering and sad; his adjustment to the microsociety inside the
prison walls is fascinating. The excellent 1978 Oliver Stone movie follows the book for the
most part, but ends quite differently. Four/five stars.

Welcome to the Jungle, I mean Marketplace! Part 2

Laurie Kelley January 27, 2014
At NHF’s Social Worker Insurance Workshop in Baltimore on January 16, there were some great questions asked from the audience concerning the Marketplace. Social workers know they will most likely be the first line of defense for patients with bleeding disorders facing the many challenges of the ACA. Here are some questions asked and other snippets of information from the workshop.
Q. What if you don’t like the insurance plan options in the Marketplace. How do you file a
special appeal [concerning coverage]?

Go to Healthcare.gov; there is a link for an appeal. Appeals are
worthwhile because sometimes codes are entered in wrong, and sometimes people
get approved for procedures and benefits that were originally denied.
Is there a limit to the number of appeals?
No.
Q: But after you pick a plan and don’t like it, what if you just don’t pay the next month’s
premium? Won’t you just get canceled and then you can choose another plan? Isn’t
that easier than an appeal?
There is an open enrollment time, so you can’t choose to switch outside that time period. After March 31 you can’t get into a “QHP” (an insurance plan that is certified by the Health
Insurance Marketplace, provides essential health benefits, follows established
limits on cost-sharing (like deductibles, copayments, and out-of-pocket maximum
amounts), and meets other requirements.)
Mike Bradley (Baxter), Laurie Kelly, and Derek Robertson (Apogenics, Inc.)
Joanna Gray, of CRD Associates told us that the ACA says HTCs must be included in-network. But… plans don’t have to include any specific medical procedure. They only need to cover “sufficient” providers, and they don’t say who those providers are. The ACA hasn’t come through in its promise. NHF says be careful! Don’t pick a plan that doesn’t include your HTC or product, because now it’s legal for providers to avoid HTCs. We can’t change the policy for this year. Maybe next? We need to complain to get changes made.
NICOLE of NHF said that every state has its own definition of EHB (essential health benefits). So picking a plan is harder, because there are more plans, and picking one that covers what you need is hard.
Q: To use the Marketplace, you must be a legal resident.  What happens to legal immigrants,
who are not citizens?
   In Nevada, they are currently covered under high-risk pools but will lose this soon (the pools are closing). Are there alternatives?
No. You can still get emergency medical through Medicaid; and of course, anyone can buy insurance in the commercial marketplace.

Nancy Hatcher and Ed Kuebler
JoAnn Volk of The Center on Health Insurance Reform, Georgetown University Health Policy Institute, said that six states will not enforce the ACA: Alabama, Missouri, Oklahoma, Texas, and Wyoming. The ACA gives primary responsibility to states to enforce the rules, but there are 10 state benchmarks (Essential Health Benefits) that must be followed, and will be reviewed by the feds.
If you find a QHB but it doesn’t include factor, JoAnn thinks that the appeals process will work, recommending that people get their drugs for 20 days, during the appeals process, even if they are not on formulary.
Q: How do I find the benchmark plan for my state?
All benchmarks are listed in the state insurance department website. www.cms.gov/CCIIO/Resources/Data-Resources/Downloads/Vermont  (for example)
Q: What’s the advantage of going into the Marketplace?
The advantage of going into the Marketplace is subsidies; you can be eligible for discounts within limits. To buy into a Marketplace, you have to be physically in the state, not incarcerated and be legally present. There are no other limits.
Q: When we couldn’t find what we were looking for (was our hematologist covered), and we called the website, we couldn’t get any help.
Don’t call the health.gov website. Call the plan provider. Sometimes it’s best to work with your HTC contracting department!  They will know who is in network.
And there is so much more information! Be sure to keep reading your HemAware (from NHF), Pulse (from us), and tap into your chapter’s or your local hemophilia organization’s efforts to educate their families about insurance changes. Lots happening; don’t miss deadlines and opportunities by not staying on top!
Great Book I Just Read (Again)
Ada Blackjack: A True Story of Survival in the Arctic  by
Jennifer Niven [Kindle]
A secret exploration to Wrangle Island, in
the Behring Sea, in September 1921 goes terribly wrong when food runs low and
sea ice keeps a relief ship from rescuing the stranded four young men and one 25-year-old
Eskimo woman trapped there. The trip sets off an international crisis when
Russia, Great Britain and the US learn that the trips leader, the opportunist and
greedy explorer Vilhalmur Stefansson, who never even went, was trying to claim
the island for Canada. Only Ada survives the horrible conditions, and her
return sets off a media firestorm. Did she kill her companions? How did she survive?
Diaries are stolen, Ada is hounded and used by the press and her own sponsors.
She becomes at once a hero and a villain. Fantastic read and Ada will amaze you
with her spirit and ingenuity. Her real survival started when she returned home.
Four/five stars

Pittsburgh: Pulse on the Road

Laurie Kelley June 18, 2013
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!

Laurie Kelley April 22, 2013
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.

Insurance Healthcare: Down to the Wire?

Laurie Kelley November 5, 2012

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.
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