Waiting for the Sun(shine Act)

Yeah, that’s sort of the name of a Doors song. Like I tell my friends, it’s always about the Doors. Just read the book review below.

But this blog, actually, is not about Jim Morrison, but about your hematologist (unless he is named Jim Morrison). He or she will have a new gig in 2014.
Doctors, like your hematologist, will soon have to
disclose gifts and payments they receive from pharmaceutical companies. Under the Sunshine Act, a provision of the Affordable Care Act, pharmaceutical and medical-device companies will have to report almost every financial transaction they have with doctors, whether paid research consultation, paid speeches, or even having dinner with them.
That information will then be published on a searchable, public website as of September 2014. Why?
Many of our hematologists receive income from consulting and speaking fees from factor manufacturers. Now, this is normal. The hematologists and treatment centers carry out valuable research, on inhibitor formation, new products and joint disease. This is often funded by factor manufacturers. And the Sunshine Act is not trying to stop that. In one brochure, it says:

“There are many interactions between physicians and manufacturers of drugs, medical devices, and medical supplies that benefit patients and advance the art and science of medicine. The Sunshine Act transparency reports provide patients and the public with information on the financial interactions of physicians and industry. These interactions often drive innovation, discovery and changes in medical practice that may promote better patient outcomes. The congressional sponsors of the Affordable Care Act (ACA) reporting provisions have stated that this process is not designed to stop, chill, or call into question beneficial interactions between physicians and industry, but to ensure that they are transparent.”

I think we can read between some lines. If you receive a large sum of money from a particular manufacturer, and you have the ability to write prescriptions, might you be a little bit biased in wanting to prescribe that manufacturer’s products?
I don’t think that question has ever been studied or answered, at least in hemophilia. Maybe the answer is no! Never! Great. But… until we have such data, there is always the possibility that there could be prescribing bias. And in hemophilia especially, we have always guarded the patient’s right and ability to have choice of product. I mean, I have devoted the last 23 years to that subject.
So the Sunshine Act is here to ensure Pharma doesn’t get carried away in generously funding research and educational symposia to the point where it is inadvertently influencing physicians, and that physicians keep track of how much they are earning and receiving from whom. Makes sense.
And physicians will have the right to review their reports and challenge reports that are false, inaccurate or misleading. It’s all for our good, the patient, the consumer, the money-generator. Another good thing to come out of the ACA.
Great Book I Just Read
The Doors Examined
by Jim Cherry
Cherry was a writer for The Examiner and in this superbly crafted book, reports the well known stories and scores of not so well known tidbits and facts about the Doors, the iconic rock band from the 60s. You will learn not only new things about the Doors, but connections to other songs, singers, rock bands and record companies that are fascinating. The book deftly networks the albums, songs and band members with their times, which were explosive. He delves deeply into Jim Morrison’s psyche and writes about how his poetry fueled the Doors’ lyrics and his antics on stage. And not just the Doors in the 60s, Cherry traces the Doors’ cultural influence all through later years, into film, art, TV, poetry and music. A Doors concert in which a fan was hit with a chair became Pete Townsend’s (The Who) inspiration for a scene in Tommy, “Sally Simpson.” Iggy Pop and Patti Smith each watched Morrison on stage and decided then and there to become stars. Cherry even covers the grave at Pere Lachaise Cemetary and Morrison ghost sightings, and Doors tours in Venice, California (sign me up). The writing is concise and firm, but the chapters do jump around chronologically and sometimes get redundant. Still, a totally fascinating and well written book about a ground breaking band, which in 6 years left a permanent influence on music and our culture. Speaking of being biased (above), I am just a little when it comes to the Doors! Four/five stars.

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

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.

Get to Know Your Ex

The word “exchange” is a funny one. It’s Latin root “ex” means  “out of, away from” like “exodus” or “exorcism.” It also means “without, not including” like ex-dividends. Or “former” as in “ex-husband.”

In health insurance, it means “confusing, convoluted, complicated comparison.”

Of course, I am only half-kidding.

But all the more reason why parents of kids with hemophilia and patients 18 and older need to start reading about and preparing to engage in the coming state insurance exchanges. These are part of the Affordable Care Act, passed by Congress and being enacted in phases with most of the changes beginning in 2014. These include the exchanges, a virtual “marketplace” (basically a web site) where people can shop and compare to buy the healthcare insurance that best suits their needs and budget. Michelle calls them the “Travelocity” of health insurance. 

But with presidential elections looming, and some states suing the government to repeal the ACA, it’s still a Wild West health insurance show out there.

On Saturday, I attended a great presentation by Michelle Rice, director of public policy at NHF about state exchanges. NHF has been holding webinars to train the community’s top advocates. Michelle reported over 85 people attended the first webinar! 

Here are some snippets of what I learned Saturday from Michelle:

1. State exchanges will be like “one stop shopping”—a gateway to coverage for 30  million people who need insurance (and don’t forget the ACA will mandate most everyone have health insurance). 

2. The exchanges allow comparisons on four levels of benefits. They provide federal subsidies for premiums and out-of-pocket (OOP) costs for people below 400% poverty.

3. There’s funding for states to set up IT development, as the websites will need to be sophisticated to help the millions who will be tapping into them. 

4. There are minimum standards for all exchanges to allow easy comparison:

5. 4 coverage tiers based on patient OOP costs; 

6. Essential health benefits (being defined at the state level)

7. There will be “navigators” to help people use the exchange,  multiple ways to enroll in person, online, phone), and one simple application

8. In 2014 all high risk pools will go away and these people will end up on exchange.

 9.   2 states, Louisiana and Arkansas,  won’t operate their own

10. 15 states already established the exchange (which doesn’t mean they can actually do it!)

11. 3 plan to establish (California, Colorado, Maryland)

12. 19 states are studying options 

13. 12 states have taken no significant action

Things are moving quickly, and if you have a chronic disorder like hemophilia, you must have insurance.

Want to learn more? Go the NHF’s website and download slides from the last webinar. Get EXcited about learning more about insurance exchanges and EXcel! The more you learn, the better you will be able to handle the coming changes. 

Good Book I Just Read

Funny Blood: The remarkable
story of my daughter Ros
 by  Juliet Batten, 2011 

This is the very sweet and easy to read story of a young English woman who in 1974 adopts a beautiful baby girl, named Rosamund (“Ros”) who later is diagnosed with von Willebrand disease. The book, while no where near as in-depth and educational as Journey by the Massies, nonetheless paints a picture of the isolation in the 1970s and 80s of having a child with VWD, a disease not written about often or paid much attention to, given the medical demand that hemophilia/HIV provided. Juliet gives a heart-wrenching testimony of her daughter’s suffering and her stoic nature, as she braves so many hospital trips and procedures, and survives her first periods, which entail lengthy hospital stays. Both mother and daughter share strong character, uncomplaining nature and solution-seeking orientation. A wonderful mother and person, Juliet, and husband John, adopt Paul, a needy and active four-year-old, adding more stress and challenges into their lives, which they seem to overcome through the years with persistence and dedication.

The book is well written, interesting and inspirational. Ros succeeds beyond all odds and is now leading a successful life. My friend Richard Atwood, bleeding disorder book critic, writes, “The author did not expect to adopt a child with a major medical problem, but Juliet was capable and her Quaker beliefs provided a peaceful serenity. By necessity, Juliet learned about VWD, became a self-taught expert, and supported others; she also wrote articles for hemophilia and for adoption. Juliet, now retired, writes in her diary as Ros writes a blog; their inspiring story is insightful for living with a bleeding disorder.”

To this I would add that the book’s only flaws are the sometimes misinformation of the medical and scientific side of hemophilia, VWD, plasma and factor concentrates. For example, Juliet writes that 3% levels of factor VIII means severe hemophilia–not true. Also her descriptions of factor concentrates are a bit off-base. The book could have used more stringent medical editing. But if you look to the book for a heart-warming story of a remarkable mother and daughter, and to gain insight on what living with VWD is like in the 1970s and 80s, you will be very rewarded. I especially like how she gave such high marks and kudos to the Haemophilia Society and her HTCs. Juliet sounds like a classy lady! Three out of five stars.

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