Hemophilia Federation of America

Help is Here!

Hemophilia—all bleeding disorders really—requires help, and not just from therapies. Due to healthcare changes, patients are required often to pay higher out of pocket costs. And sometimes, it’s just life: single parenting, limited job opportunities, higher education bills, gas, care and health insurance. We could all use help.

Hemophilia Federation has a great listing of all their ways they might help. HFA has long impressed me with their direct-to-patient aid. It’s a lot like what we do with Save One Life overseas: we give direct aid to those most in need. You local chapter might be a good first place to start, but then look at HFA’s website to learn more.

Check out these opportunities and find out if you are eligible:

Kentucky Reigns

This week I travel to Kentucky to meet with many old friends and to be introduced to new ones at Hemophilia Federation of America’s annual Symposium. I usually am traveling overseas and have missed the last few years. HFA’s Symposium brings community members together to attend educational sessions, meet new members of the community, experience HFA programming, get motivated to action and to also have fun.

I am especially interested in the program on Healthcare Reform, to hear how healthcare reform may impact those with bleeding disorders.

So when was the last time you checked out the Hemophilia Federation of America’s website?

It’s a great place to see advocacy in action. If there is one word I’d use to describe HFA, it’s advocacy. Founded in 1994, HFA has come a long way to define itself as a national organization. It was founded to meet unmet needs, though at the time we already had a national organization. The US is a big country, and diverse, with a traumatic history regarding hemophilia. HFA began as a grassroots upstart, defying the status quo and challenging the system—it’s primary focus was on blood safety, which made sense since so many of those who founded HFA were affected by the HIV contamination.

Now, with much of that behind the community, HFA still keeps its activist core and encourages families to join their efforts. This is much needed now as we enjoy the benefits of the new healthcare reform even while we worry what it holds in store for us.

Tune in next Sunday when I will provide some highlights and photos from my visit.

And visit www.hemophilifed.org to see what this driven and talented group is accomplishing!

Great Book I Just Read
The Good Earth by Pearl S. Buck

This is one of my all-time favorites and I read it again just to keep it fresh. A timeless tale of poverty, starvation, survival and then success, and how the wheel of life keeps turning. Set in 19th century China, Wang Lung, a poor farmer, awakes on his wedding day. His wife, O-lan, a former slave in the house of a great lord, is homely and silent, but makes an excellent wife. The couple work the land and their efforts are rewarded. Until the drought… with great simplicity but beauty Buck pulls back the veil on peasant life in China, the beliefs and customs, while addressing human frailties that transcend all cultures and countries. Four stars.

Staying in Touch With Insurance Reform

When I was 18 and became eligible to vote, I began reading weekly news magazines to try to stay abreast of world and national events. Tonight I skimmed through Time magazine and tried to get a better understanding of health care insurance.

I know it’s hard to get started learning a new subject when you’ve never tracked any national world news–I mean, who’s the new Speaker of the House? What might change the course of politics in Zimbabwe suddenly, and what is China’s environmental status? I found the news magazine The Week, which gives brief but insightful synopses of the week’s editorials on events, in a debate pro-con format, which allows us to make our own mind’s up about what we are reading.

HFA’s Friday Update is an email newsletter that gives you excellent summaries of insurance news that has to do with bleeding disorders. All you have to do is subscribe at www.hemophiliafed.org, and an email will arrive every Friday in your Inbox, with a summary like this below, with live links to complete articles. I can think of no better way to watchdog what is happening–something we all need to do! And you may have heard that HFA president (and friend) Paul Brayshaw, and a photo op recently with President Obama, in Paul’s backyard! So… start reading this coming week, and learn!

Sample for this week….

Senate Votes to Postpone Doctors’ Medicare Cut

The Senate voted late Thursday to postpone a massive cut in Medicare pay for doctors, agreeing to pay doctors at current levels through Dec. 31. Senate leaders also promised to work toward a 12-month postponement before the end of this year. Doctors were threatening to stop taking new Medicare patients if the cut went through. The measure now goes to the House, which has adjourned for the week. House Majority Leader Steny H. Hoyer, (D-MD), announced Thursday evening that the chamber would take up the measure Nov. 29. Read More

Department of Health and Human Services Amends “Grandfathered” Regulation

As of November 15th, employers will now be able to change insurance companies and keep their “grandfathered” status as long as the change does not result in a significant increase in cost or a significant decrease in benefits as laid out in the health care reform law. One of the concerns that prompted the change was that the original rule may have given an unfair advantage to insurance companies when negotiating pricing and benefits with employers because of the employer’s fear of losing “grandfathered” status. Learn More

Republican Senators file brief in favor of court challenge to Health Care Reform

The Senators filed a 16-page brief in the federal case based in Florida arguing that a key part of the new healthcare law (the requirement that all individuals have health insurance) is unconstitutional. Learn More

Department of Health and Human Services Provides Guidance on “Exchanges”

The document is the first in a series that the Department of Health and Human Services (HHS) will publish over the next three years to provide information to states and the territories seeking to establish a Health Insurance Exchange under the Affordable Care Act. Regulations for public comment will be issued in 2011. This guidance is intended assist states and territories with their overall planning, including legislative plans for 2011. Learn More

Bipartisan Bill Would Allow State Waivers From Health Law Provisions

Sen. Ron Wyden, (D-OR) and Sen. Scott P. Brown, (R-MA) collaborated on a bill (Empowering States to Innovate Act), that proposes to move up the date when states would be allowed to opt out of certain obligations in the health care overhaul law — including the controversial requirement that all people purchase health insurance. The bill is the first time a Democrat has teamed up with a Republican to try to modify the health care law. It is also the first time a Republican has offered legislation to ease a requirement in the law rather than repeal it. The Department of Health and Human Services would have to confirm that the state provides coverage at least as affordable and as effective as what the law requires. In addition, the state alternative would have to insure a comparable number of residents and not increase the federal deficit.

Senate Finance Committee Holds Hearing on Health Care Reform Law

During the hearing on Wednesday, the Committee heard from Administrator Donald M. Berwick. Berwick testified that his goals include: better coordination of care through systems such as Accountable Care Organizations, improved care for chronically ill patients and prevention. He also stated “his job is to make Medicaid stronger and more viable, and he realizes states are facing tremendous budget pressures in the economic downturn.” Republicans used the hearing as an opportunity to voice their concerns regarding the new health care reform law and their intentions to closely monitor Mr. Berwick’s actions at CMS, while Democrats used their time to show support for the new law and for Mr. Berwick. To download Donald Berwick’s testimony and the statements from the Senate Finance Committee visit the Committee’s website.

CMS Introduces New Center for Medicare and Medicaid Innovation

Created by the Affordable Care Act, the Innovation Center will examine new ways of delivering health care and paying health care providers. CMS also announced the launch of new demonstration projects that will support efforts to better coordinate care and improve health outcomes for patients. For more information on CMMI visit their website.

The New York Times Reports on “Health Rule Waivers”

Administration officials are issuing more waivers to try to prevent some insurers and employers from dropping coverage. Read More

State Update

State Medicaid Directors Move Toward Formal Affiliation with the National Governors Association Read More

HFA’s Outstanding Insurance Advocacy

I have been so impressed with the publications and postings coming from the Hemophilia Federation of America, once a small-time, grassroots nonprofit, and now after 10 years, poised to become one of our strongest voices to Congress and industry. With the additions of Steve May and Kisa Carter, HFA has become a professional powerhouse of insurance publications.

I completely endorse their outstanding work. Please sign up to get their “Friday Update,” available through the colorful, active website: www.hemophiliafed.org

The timing couldn’t be better with big changes coming via health care reform. This article ran two weeks ago, about “medical debt.”

States begin to address medical debt
November 19th, 2009 by Steve May
Paying for health care is becoming increasingly difficult for American families. Fewer workers are receiving health coverage through their jobs, and those who do have job-based coverage face rising out-of-pocket costs. Not surprisingly, more families are going into debt trying to pay for the health care they need. The health reform proposals that are currently before Congress would prevent millions of families from accruing medical debt by making insurance affordable for people who are now uninsured, capping out-of-pocket costs for those with insurance, and making sure that people with low incomes have lower out-of-pocket costs. Some provisions in these bills will go further by helping people who are struggling with medical debt.

While these bills will help families and individuals avoid getting into medical debt, they don’t address every aspect of this complex problem. That’s where states come in. Some states have already taken action to ensure that low-income, uninsured or underinsured Americans are charged fair prices for their care, do not face high interest charges when they cannot afford to pay their medical bills immediately, and are protected from aggressive debt collection practices

Families USA has just issued a report which begins to address the various state efforts to curb the dire impacts medical debt has on people who are addressing illnesses. For more information about the Families USA report follow the link attached here: http://www.familiesusa.org/resources/resources-for-consumers/coping-with-medical-debt.html

Also check out: http://hemophiliafed.org/advocacy/blogs/

There are also some wonderful videos of actually patients sharing their stories–fabulous idea. Take advantage of the great and easy-to-read publications that HFA offers; write today and start receiving. Remember, they are working hard for all of us, and for your child’s future!

Great Book I Just Read
Shackleton’s Forgotten Men by Lennard Bickel

I am a huge polar explorer fan, and love to read every book I can about the subject, particularly the South Pole. This book pays tribute to the men who were the second half of Ernest Shackleton’s famed Imperial TransAntarctic Expedition of 1914. All of the attention has been put on Shackleton’s seemingly miraculous stamina, leadership skills and story as he saved all his men from near disaster in perhaps the greatest survival story every told. But while leadership books boast that not one died under his watch, this was not entirely true. On the other side of the Antarctic was the Aurora and its crew, set to lay out the numerous depots of food that Shackleton would need as he traversed the Antarctic on foot–a feat he did not accomplish. This book tells in riveting detail their story. Like Shackleton, the group lost their ship and supplies, and they suffered horribly. Only they never got the recognition for their heroic sacrifices. Fabulous storytelling by Bickel who also wrote Mawson’s Will, about the legendary Australian geologist and explorer, and teammate of Shackleton. I read this book in two nights! Four stars.

Our Own Academy Awards

The Academy Awards was Hollywood’s big event last night but this coming weekend is one of our own big events in hemophilia: the annual Hemophilia Federation of America (HFA) meeting, in Albuquerque, New Mexico. We won’t have Versace gowns and bling, but we certainly have an all star cast and some great shows. It’s casual but energetic, electric with advocacy issues, medical news and networking. It’s smaller than NHF meetings, which creates a more intimate atmosphere; it’s less like a red carpet event and more like a family reunion.

The HFA does important work in advocacy, particularly around the issues of product and provider choice. Check out their website at www.hemophiliafed.org. Sign up for their newsletter; check out their programs. I met with a pharmaceutical representative recently who is new to our community; this will be his first hemophilia event. I told him he was in for a treat. I myself will not be attending this year. If you do not attend either, at least tune in to read about the event on the HFA website or in their magazine, and see who is best director, best program, best advocate!

PS. “The Departed” was most certainly best movie of the year… and it’s set in Boston! You have to love those accents.

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