Pulse on the Road

Medicare… Me?

Laurie Kelley October 23, 2022

Yup. This week I turn 65, and I am officially on Medicare! It makes turning 65 a joyous event. Really!

Switching healthcare policies over to Medicare was surprisingly easy. But partly this is due to my previous work on hemophilia and healthcare. Back in 2005, we were the ones to alert the community to the “Coming Storm” in insurance. We alerted the community that choice was going to start getting restricted; you would need to accept tiers of medicine, PBMs were going to dominate, and choice of factor may no longer exist. All this in the name of healthcare cost-cutting. And it all came to be.

We took our message out on the road, in a live-action form of our newsletter PEN’s Insurance Pulse, calling the workshops Pulse on the Road. We did this for 10 years. I must say that Michelle Rice, mother of two with hemophilia and formerly with the National Hemophilia foundation was our healthcare insurance guru, and taught me so much!

Glory days! Michelle Rice, Kelly Lynn Gonzalez and Laurie Kelley

And now I get to use it. Medicare is for anyone over age 65. It’s an entitlement program; you start contributing to it when you start working, kind of a forced saving plan. It’s made up of several parts. Part A is free of cost, but has limited healthcare coverage. It covers medically necessary inpatient hospital care (including rooms, meals, general nursing and drugs), skilled nursing facility care, some nursing home care (if following an inpatient hospital stay) and hospice care.

Part B is optional but I strongly urge everyone to get it; it doesn’t cost that much per month as an add on. It covers: medically necessary doctor services; outpatient medical care; durable medical equipment; some preventive care and other medically necessary services Part A doesn’t cover, such as ambulance services; cardiovascular, cancer and diabetes screenings; and laboratory services. Pretty important stuff, especially as you age.

Part D covers prescription drugs.

Our community is aging, which is good news! But people with hemophilia from previous generations, now in their 60s and 70s will have health issues, such as joint deterioration. It really pays to advocate, ask lots of questions and learn more about Medicare. You can enroll during the month you turn 65, but you should start researching it and apply for it three months before that. Go to https://www.medicare.gov/ to learn how to apply.

Until then, enjoy your youth! And stay on top of all insurance, Medicare or not.

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.

Pulse on the Road in San Diego!

Laurie Kelley June 30, 2014

Pulse on the Road is our three-hour insurance symposium that updates families with bleeding disorders on insurance reform in their state, the Affordable Care Act (ACA), and how to compare and research insurance policies. Sponsored by Baxter Healthcare, implemented by us, we bring expert speakers, like NHF policy expert Nicole Quinn-Gato, to families around the country.

This week, San Diego! We had a cozy gathering of about 40 family members at the San Diego Zoo, minus about 40 kids who went off with “Birdman” for the kids program. Seated in the Treetop Conference room, families listed to our speakers all morning, while Spanish translation was provided by specialists to our Latino families.

Elizabeth Stoltz, Senior Manager, Healthcare Economics & Reimbursement at Baxter Heathcare, presented an overview of the Affordable Care Act, including the many benefits and things to watch out for. It’s 2014, and about 8 million Americans have enrolled in the Marketplace—the on-line place to shop and compare insurance plans. Remember, it’s mandatory now that every American have health insurance or face a penalty.

I next spoke about the importance of choosing your own plan. While there is a lot of technically policy stuff to cover in these symposia, I aways stress to the audience we teach this to save you money, out of pocket expenses. And to emphasize this, I ask a question after each speaker, relevant to what they just presented on. Whoever gets the right answer gets $10! This wakes up our audience, creates a friendly competitive spirit, and is just plain fun!

Our audience got so into this game that even Robert, the man who set up the translator booths—and has nothing to do with hemophilia—answered one of our questions correctly first! Of course, he didn’t get the $10 as he is not related to hemophilia!

Laurie helps Taylor with the Marketplace

And lastly, Nicole gave a one hour live demonstration of “coveredca.com,” California’s marketplace. Wow, what a challenge! The exercise showed how complicated the California Marketplace is; it was a tough exercise, but I was proud at how families stuck with it, got the answers they needed, and ask us all for assistance in locating certain pages on the site. We had provided laptops for each table and they were all used well!

Lunch was served afterwards, where we got a chance to socialize with the families. This was then followed by goodbyes and a visit to the largest zoo in the world, compliments of Pulse on the Road!

Next stop? Houston in August!

Insurance Workshop in Nebraska: Pulse on the Road 2014

Laurie Kelley March 24, 2014

Warm air greeted greeted us in Omaha, Nebraska on Friday as I arrived from Boston to set up for our first Pulse on the Road workshop of 2014. POTR is a three our workshop, sponsored by Baxter Healthcare and held in tandem with the National Hemophilia Foundation, which so generously lends us the incomparable Michelle Rice, mother of two adult sons with hemophilia, and director of public policy at NHF. Last year she hired more staff to help her, as she is stretched thin visiting chapters, patients, insurance companies and governments in all 50 states. On this trip we were thrilled to have Nicole Quinn-Gato of NHF, also a policy specialist, accompany Michelle.

The warm welcome by Nebraska Chapter of NHF executive director Kristi Harvey-Simi was followed by an update on the Affordable Care Act by Kim Isenberg, Senior Manager, Reimbursement and Advocacy, Baxter Healthcare. She covered the ACA in general and as it affects hemophilia, noting exceptions for some groups. Nevada has elected not to expand state Medicaid, an important policy to note.

I then presented important points on the importance of choosing
healthcare, since it is now mandated that almost everyone have healthcare. We
need to still watch out for certain variables, such as out of pocket costs,
which may increase as a result of changing policies and plans.

And finally, Michelle and Nicole did a great job proving a 90-minute, hands-on workshop to access the healthcare.gov website, using laptops and iPads, and actually logging on to scope out choosing a plan! It was interesting and frustrating at times! Sometimes it’s hard to find your HTC, was the most common problem.

After lunch there was a Q&A, where the audience could ask questions of the experts.

Though I offered everyone a chance to go home an hour earlier, nobody took advantage: I think they were really soaking up all the information Michelle, Nicole and Kim had to offer!

Next stop for POTR? Philadelphia in June!

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)

• 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.