Friday, January 28, 2011

States May Face Showdown With Feds Over Cutting Medicaid Rolls - Kaiser Health News

States May Face Showdown With Feds Over Cutting Medicaid Rolls - Kaiser Health News

Jan 28, 2011

Financially strapped governors, Congress and the Obama administration could be headed for a showdown over the Medicaid health care program that covers 48 million poor, disabled and elderly people nationwide.

Arizona's governor has already asked for permission to drop people from the joint federal-state program, which states say is eating up huge portions of their budgets. But to do so, they need the green light either from Congress or the Obama administration.

If they don't get one? States warn they may need to slash payments to doctors and hospitals and make deep cuts in other programs such as education. They could even thumb their nose at the law and cut eligibility, which would force the Obama administration to decide whether to cut all federal Medicaid funding to those states.

The new health care law requires states to maintain their Medicaid eligibility levels for adults until 2014, when much of the law kicks in. In the meantime, federal funds that helped most states maintain their Medicaid programs – part of the 2009 stimulus package --comes to an end in June, even as enrollment remains at an all-time high while the nation struggles to recover from the recession.

Republicans in the House generally want to allow states more leeway, but their only hope is to get some members of the Democratic-controlled Senate on board.

Sen. Max Baucus, D-Mont., who chairs the Senate Finance Committee, said in an interview he is aware that states are under pressure to cut eligibility and that he will "look at" options. Still, he said, any such effort should "find a way to maintain as much coverage as we can."

He and other Democrats, including Iowa Sen. Tom Harkin, chairman of the Health, Education, Labor and Pensions Committee, and House Minority Leader Nancy Pelosi of California, said they would like to extend the expiring Medicaid aid until 2014.

The odds are against making such a move. Republicans have complained bitterly about the stimulus funding. Now that they control the House, they’re stressing the need to narrow the ballooning federal budget deficit.

Arizona, which says its Medicaid spending has gone from 17 percent of its general fund in 2007 to nearly 30 percent this year, recently asked the administration for permission to drop coverage for 280,000 Medicaid recipients. The state argues it's already more generous than most states – it's one of only 7 states that cover childless adults -- and says Medicaid costs are jeopardizing other priorities.

Other states also are likely to seek waivers. "The states are reaching a crisis point fiscally," said Dan Mendelson, CEO of Avalere Health, a consulting firm. Still, allowing states to drop coverage "runs directly counter to the goals" of the Obama administration, he said, adding that it would lead to "an erosion of coverage before the next (presidential) election."

Earlier this month, the National Governors Association and the Republican Governors Association urged congressional leaders to let them downsize their programs. Matt Salo, director of the Health and Human Services Committee at the NGA, said that some governors’ staff members are warning congressional offices that, unless they get help, they might have to ignore the law and change their eligibility rules anyway.

If that occurred, the federal government would have to decide whether to stop sending Medicaid money to those states. Even without the extra stimulus aid, the federal government, on average pays 57 percent of the cost of the joint program; in some states it is as much as 75 percent.

The health law – and the stimulus program – both require states to maintain eligibility, just as do other agreements between the states and Congress where matching federal funds are involved. Without such rules, there "isn’t a mechanism that the states will use funding the way it is intended by Congress," says Mendelson. "States have taken a lot of federal money over the past couple of years with strings attached and these are the strings."

Under the law, Medicaid will expand sharply in 2014 when 16 million more people are expected to become eligible for the program. The federal government will pick up the full tab for the newcomers for the first three years. By 2020, the federal share ratchets down to 90 percent.

When asked whether he would support loosening the eligibility rules for states, Donald Berwick, the administrator for the federal Centers for Medicare and Medicaid Services, said that he was sensitive to the states’ situation. His solutions, however, were to point states to funding that he said is already available to them, such as subsidies to establish insurance exchanges. Moreover, he added, his agency plans to make recommendations to states on ways to lower costs by improving care. One example is reducing hospital admissions, said Cindy Mann, director of the federal Center for Medicaid and State Operations.

Democrats in Congress have additional ideas, but most have little chance of moving forward because they go against Republican priorities of reducing federal spending and control.

Harkin, for example, said he also plans to look into an idea that has surfaced in the past to turn Medicaid over entirely to the federal government. "Maybe the federal government should take over the whole thing, and in exchange states would do other things," he said.

Mendelson points to another past proposal for the federal government to pick up the nursing home costs for Medicaid enrollees who are also eligible for Medicare, the federal health program for the elderly.

The elderly and disabled account for the majority of Medicaid spending, with a good chunk of that being used for long term care. Medicaid payments represent 40 percent of all nursing home spending, according to the Kaiser Commission on Medicaid and the Uninsured. (KHN and the Kaiser Commission on Medicaid and the Uninsured are both part of the Kaiser Family Foundation.)

While AARP's state policy director JoAnn Lamphere says the idea is "intriguing," it is "a long term policy discussion that not going to save the states right now."

Thursday, January 27, 2011

Alcohol Prep made in the Good Ol USA. Finally. Lets use this one.

Link here to go to an alcohol prep made in the USA. 

Pregenics and Pfizer warning on Alcohol Preps.

NEW YORK — Progenics Pharmaceuticals Inc. and Pfizer Inc. said Tuesday they are warning physicians and patients not to use the alcohol prep pads that come with its Relistor injection kits because the pads have been recalled by their manufacturer.
Relistor is an injectable drug that is used to treat constipation in patients who are on opioid pain medications. The drug is sold in individual vials, as well as in kits that include vials, syringes, and alcohol prep pads that are swiped over the skin to clean the site for injection. The prep pads are made by Triad Group Inc., and earlier this month, Triad recalled all its alcohol prep pads, swabs, and swab sticks because one of its customers was concerned that the products were contaminated with bacillus cereus, a bacterium that can cause food-borne illnesses.
The contamination could cause life-threatening infections, Triad said. So far, it has received one report of a non-life-threatening skin infection.
Progenics and Pfizer said doctors and patients who have the Relistor kits should use a different alcohol pad or a sterile gauze pad with the injection. The kits remain on the market, but shipments of new kits have been suspended until all the pads can be replaced. Triad's pads are not included in Relistor single-vial kits or in any Relistor kits sold outside the U.S.
Triad's recall started Jan. 5. Its alcohol pads were sold in the U.S., Canada, and Europe under Triad's name, and under third-party brands including CVS, Walgreens, Cardinal Health, PSS Select, and others.
Relistor is approved for use in patients with advanced illnesses who are receiving specialized care to reduce the pain of their illness. Progenics sold the drug through a partnership with Wyeth, but Wyeth ended the collaboration as it was being acquired by Pfizer in late 2009. Progenics is trying to get additional market approvals to bolster sales of the drug, which totaled $4.1 million in the third quarter of 2010.
Shares of Progenics, which is based in Tarrytown, N.Y., fell 2 cents to close Tuesday at $6.04. Shares of New York-based Pfizer rose 2 cents to finish at $18.47.

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Tuesday, January 18, 2011

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Sunday, January 16, 2011

amednews: Only 8,000 enroll in health plan for preexisting conditions :: Dec. 27, 2010 ... American Medical News


Only 8,000 enroll in health plan for preexisting conditions

Because many patients and physicians don't know about the program, some states are reaching out to advocacy groups that serve people with chronic conditions.

By Geri Aston, amednews correspondent. Posted Dec. 27, 2010.

A new nationwide effort to provide health coverage to uninsured Americans with preexisting conditions is off to a slow start, largely due to high costs and a lack of awareness.

As of Nov. 1, only 8,011 people were enrolled in the Pre-Existing Condition Insurance Plan, numbers from the Dept. of Health and Human Services show.

People who have been denied coverage by private insurers because of a preexisting condition and who have been uninsured for at least six months are eligible to participate in PCIP. The idea is to give patients who have no access to private coverage because of their condition a way to get insurance while they wait for the state-based health insurance exchanges to launch in 2014.

Almost 6 million Americans are potentially eligible for the program, which runs through 2013, according to a report published in October by The Commonwealth Fund. However, because the $5 billion in federal funding designated by the law won't be enough to cover all eligible individuals, the Congressional Budget Office projects enrollment will average 200,000 a year between 2011 and 2013.

The PCIP is administered by either individual states or the federal government. Twenty-three states and the District of Columbia decided to let the federal government oversee their programs. People in those areas began signing up July 1. The remaining 27 states chose to administer their own programs. Their start dates varied, but all plans are up and running.

Enrollment varies

Enrollment numbers vary widely by state due to a combination of factors, including differences in PCIP costs, the number of uninsured people and the insurance terrain for high-risk individuals in each state, said Jean Hall, PhD, associate research professor at the University of Kansas Center for Research on Learning's Division of Adult Studies.

Monthly premiums for the federal health plan for patients with preexisting conditions range from $320 to $570.

Pennsylvania, which manages its own program, had the highest enrollment, with 1,657 people as of Nov. 1. By contrast, no one had enrolled in the federally administered PCIP in the District of Columbia, and one person joined the federally administered program in North Dakota.

Nationally, the numbers are lower than expected primarily because most consumers don't know the program exists, Dr. Hall said. That could change because some states are beginning to reach out to advocacy groups that serve people with chronic conditions, said Dr. Hall, a co-author of the Commonwealth Fund report. Alerting people who might qualify for the insurance worked in Pennsylvania, she said. The state sent a letter to people on the waiting list for its adultBasic, a state-managed insurance program for people who have gone without coverage for 90 days.

Many physicians also aren't aware of the program, said Dennis Olmstead, chief economist and vice president of practice economics and payer relations at the Pennsylvania Medical Society. The society has included information about the program in its newsletters. If doctors or their front office staff know of patients with preexisting conditions who are uninsured, they could notify them of the PCIP option, Olmstead and Dr. Hall said.

A question of cost

Another reason for the slow start is the coverage costs. Premiums reflect standard individual market rates in each state. This makes them less expensive than typical state high-risk insurance pool coverage, but still pricey.

For example, in states where the federal government provides coverage, the monthly premium for a 50-year-old enrollee ranges from $320 to $570, according to HHS. Premiums and deductibles in state-administered programs vary widely. The health reform law caps out-of-pocket expenses at $5,950 a year for individuals.

"Affordability is an issue, because really what this does is give people access to the individual market, and the individual market is expensive," Dr. Hall said. "You have to look at it as a stopgap for people that can afford it. It's a good bridge to the exchange coverage."

Some states, including Pennsylvania and New York, set premiums below the standard rate to make the program more affordable, Dr. Hall said. She expects more states to do so in the coming year to entice people to sign up. "They're trying to respond to what they've been hearing as far as why people aren't enrolling."

The federal government is making changes to try to attract more people to the program. Now, only one coverage option, the Standard Plan, is available in states where the federal government runs the PCIP. It has a single medical and pharmacy deductible of $2,500. The 2011 Standard Plan will have two deductibles -- a $2,000 medical deductible and a $500 prescription drug deductible. Premiums will be almost 20% lower than 2010 levels.

In addition, two new plan options will be available in states with federally administered PCIPs. One is the Extended Plan, which will have a $1,000 medical deductible and a $250 drug deductible. Its premiums will be slightly higher than 2010 levels. The other is a health savings account, which will have a $2,500 deductible but premiums that are 16% less than 2010 levels.

The changes are a positive development, especially the lower prescription drug deductibles in the Standard and Extended plans, Dr. Hall said. Most states offer only one plan, but Dr. Hall expects some of those programs to follow the government's lead and offer new options in 2011.

This content was published online only.

Medicare and End of Life Planning


Medicare about-face on end-of-life planning pay

Medicare started covering voluntary advance-care counseling during annual physicals, but it rescinded the policy after only five days when the issue again proved toxic.

By David Glendinning and Chris Silva, amednews staff. Posted Jan. 10, 2011.

In a surprise turnaround, the White House announced Jan. 5 that it was undoing a 2011 Medicare policy that would have paid physicians to advise patients about end-of-life care and other advance-care planning during annual wellness visits.
The new Medicare payment policy had gone into effect on Jan. 1. It was unveiled on Nov. 29, 2010, in a Centers for Medicare & Medicaid Services final rule that outlined doctors' 2011 pay rates. It stated that the program would cover voluntary advance-care planning consultations, including discussion about setting up an advance directive that would guide physician care if a patient became too ill to make medical decisions.
A CMS official explained Jan. 5 that the language was being removed because it had not been included properly in a proposed version of the rule released earlier in 2010. But the reversal, confirmed shortly before this article's deadline, appeared likely to prompt speculation that it was an attempt by the White House to avoid a political battle with House Republicans, who officially took control of that chamber the same day the policy was revised. The CMS official asked not to be named because the change had not been announced formally.
When it was raised during the health system reform debate, advance-care counseling prompted a furious backlash from reform critics, who said the effort was one of several that would lead to government-sanctioned euthanasia. It was one of the primary elements feeding warnings about federal "death panels."
Under that proposal, doctors would have been able to bill Medicare separately for advance-care planning consultations once every five years, or when a patient's health changed dramatically. The plan also suggested that physician performance could be measured in part by whether patients had advance directives or living wills. Under heavy fire, its authors stripped the provision out of the reform bill.
The latest Medicare policy was significantly pared down. Had it stayed in effect, physicians would not have been paid a separate rate for the service. It would have been included as part of the fee for the wellness visits that Medicare already covers.
But despite noting that such a benefit already exists for incoming seniors under the "Welcome to Medicare" physical, a policy put in place by the George W. Bush administration, the White House was unable to avoid controversy again. Reform law critics suggested that the Obama administration was attempting a regulatory end-run around a Congress that had already rejected the concept.
"Seniors rightly fear there is a potential conflict of interest if the government is paying for end-of-life counseling and also for our end-of-life health care," said Grace-Marie Turner, president of the Galen Institute, a Washington, D.C.-based research group dedicated to free-market health policy ideas.

Recognition deferred

The policy reversal meant many physicians who have called for Medicare to recognize the value of advance-care planning will need to wait longer to achieve that goal.
The CMS official said nothing about the change would prevent beneficiaries from having end-of-life care discussions with doctors. But the talks would not be covered officially.
Physicians said paying for end-of-life care consults during physicals would recognize the work doctors have done for years and help promote the need for the discussions to a wider audience. They said research shows having such talks increases the quality of life for seniors and their caregivers and helps sort out options before a medical crisis occurs.
"The AMA supports Medicare reimbursement for physician advance-care planning consultations with a patient," American Medical Association President Cecil B. Wilson, MD, said before the new pay policy was reversed.
"We encourage physicians to have these discussions with their patients before a serious illness strikes to ensure patients have the information they need, sufficient time to carefully consider their options, and the opportunity to make their care preferences known if they choose to do so."
At least one physician organization suggested, before the reversal, that the Medicare benefit should be even more robust.
"ACP supports greater recognition and adequate Medicare reimbursement for extended and complex counseling required for physicians to develop end-of-life care plans for their patients," said J. Fred Ralston, MD, president of the American College of Physicians.
Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization, said acknowledging the need for end-of-life care counseling through Medicare was the smart thing to do.
"If someone met with a financial planner, they would be told about a number of tools that could fit their needs, and the planner would be compensated for their time," Radulovic said.
"Why wouldn't you want to give the same attention to your medical health as your financial health?"
David Casarett, MD, a palliative care physician and associate professor of medicine at the University of Pennsylvania, said the policy reversal was the wrong decision.
"This is a substantial setback for patient choice and autonomy, a sad disappointment," Dr. Casarett said.
The print version of this content appeared in the Jan. 17 issue of American Medical News

amednews: Washington state denies Blues plan's rate hike request :: Dec. 30, 2010 ... American Medical News

amednews: Washington state denies Blues plan's rate hike request :: Dec. 30, 2010 ... American Medical News


Washington state denies Blues plan's rate hike request

Regence Blue Shield wanted to tack on increases to individual plans because of changes necessitated by the health system reform law.

By Emily Berry, amednews staff. Posted Dec. 30, 2010.

Washington State Insurance Commissioner Mike Kreidler has rejected a request by one of the state's largest insurers for higher premiums after several calls for more information about the plan's application.

The rates would have affected customers with individual coverage beginning Jan. 1, 2011.

In October, Regence Blue Shield raised rates for two lines of individual policies by 16.5% and 23.7%.

The insurance company is replacing those policies with new ones called Evolve that cover children and offer other safeguards required by the Patient Protection and Affordable Care Act. Existing customers are required to sign up for new Evolve policies. Regence wanted to make those policies more expensive than the existing ones, but Kreidler rejected the request. The proposed increase for one line was 3.7%, and 4.9% for another line.

"Regence failed to make its case," the commissioner said in a Dec. 7 statement. "I'm disappointed and frustrated that I've had to take this step, but Regence's policyholders are my top priority. They're counting on me to review the rates and make sure they're justified."

Regence has not decided whether to appeal Kreidler's decision. "Regence met with the [Office of the Insurance Commissioner] to discuss additional information that the commissioner had requested, and we expect to continue working with them to address their concerns," spokeswoman Rachelle Cunningham said in an e-mailed statement.

In November, Kreidler asked legislators to change state law so that he may retain the right to reject rate increase requests permanently. Otherwise, that authority ends on Dec. 31, 2011. He also wants to be able to consider the surplus levels of insurers when he decides whether to grant those requests.

Regence had an estimated $1.7 billion in reserve in the first quarter of 2010.

Kreidler also asked state lawmakers to make rate increase applications public, which they currently are not unless the insurer agrees to their release.

The Washington Legislature is expected to look at bills on those matters when it convenes in January 2011.

The insurance commissioner in Oregon, where Regence is based, may consider reserves in deciding whether to approve rate increases and to make rate increase applications public.

This content was published online only.

Copyright 2010 American Medical Association. All rights reserved.

Texas House bill would create state-run health insurance exchange | News for Dallas, Texas | Dallas Morning News | Science and Medicine | Health

Texas House bill would create state-run health insurance exchange | News for Dallas, Texas | Dallas Morning News | Science and Medicine | Health

Yahoo! Buzz

Texas House bill would create state-run health insurance exchange

09:58 AM CST on Thursday, January 13, 2011
By ROBERT T. GARRETT / The Dallas Morning News

AUSTIN – A key House GOP health policy writer has filed legislation to create a state-run health insurance exchange in Texas.

A bill by Rep. John Zerwas, R-Katy, would create a Texas Health Insurance Connector, or simplified insurance market.

It would serve as the state's insurance exchange as required under the federal health overhaul passed last year, Zerwas said Thursday.

"My opposition to the federal health care reforms is no secret, and I continue to support Attorney General Greg Abbott's efforts to have the law declared unconstitutional," he said.

"But the ‘connector concept' has been around for decades and did not originate with Obamacare," Zerwas said. "Quite frankly, it is something that we should consider on its own merits regardless of the fate of the federal reforms."

Under the federal law, state exchanges will require insurers to compete in offering standard coverage in five categories. The idea is to make it easier for consumers to compare policies and prices. Exchanges also will help administer federal subsidies to low- and moderate-income individuals and families buying coverage.

Zerwas, an anesthesiologist, stressed that if Texas lawmakers don't act this session, the U.S. Department of Health and Human Services would set up an insurance exchange for Texas.

He said major lobby groups representing doctors, hospital and big business have endorsed his proposed connector, which would have a seven-member board, including the state social services czar and insurance commissioner.

The governor would name board members, including several from lists submitted by legislative leaders. Some would have to have experience in the health care industry. Others would represent consumers and small business.

It "would supplement, not replace" Texas' existing private market, which served 1.5 million individuals and small businesses with 650,000 employees in 2009, Zerwas said.

Two states already have set up exchanges – and they include conservative Utah as well as liberal Massachussetts, he noted.

Last session, Zerwas was the House's chief social services budget writer. Since last January, he has headed a special panel Speaker Joe Straus created to explore how federal legislation, especially on health care, would affect Texas.

How are States Dealing with the new Healthcare Law and MEDICAID?

Friday, January 14, 2011

Health care budgets in critical condition

Comments Write the editor Print this story

This week, Stateline takes its annual look at the trends and issues that will be the most discussed topics in state government in the coming year.

Monday: How the Great Recession has changed state government
Tuesday: What political change in Washington means for states
Wednesday: Who controls redistricting in the states
Thursday: The state budget outlook
Friday: Implementing health care reform while struggling with medical costs

Click here for previous editions of State of the States.

Ever since Congress passed a sweeping health care reform law last year, states have been split into two groups moving essentially in opposite directions.

Going one way are states like California, where leaders from both parties have embraced the federal law and even accelerated plans to implement it. Democrats in the Legislature last summer wasted no time writing a bill to create a health insurance exchange — a key element of the national framework — and Republican Arnold Schwarzenegger, who was then governor, signed it. California also sought and won a special waiver from the federal government to allow low-income adults now covered by state-funded health care programs to move into federally funded Medicaid plans prior to the 2014 effective date.

Going the other way are states like Arizona, where leaders wish the federal health care law would go away. First, Republican Governor Jan Brewer joined one of several legal battles aimed at overturning the federal law. Then, Brewer supported a successful ballot measure that rejects one of the core principles of the law, the so-called “individual mandate” requiring every American to buy health insurance. Now, with a gaping hole in her upcoming budget, Brewer is asking Washington for permission to scale back Arizona’s existing Medicaid program until health care reform takes effect in 2014.

This dual-track dynamic is likely to continue this year as states wrestle with two separate but related health care concerns. One is the many federal deadlines creeping up on states — dates by which the law requires them to make key decisions related to implementing health care reform. The other is the overwhelming cost of Medicaid. The state-run health insurance program for low-income people is eating up a fast-growing portion of state budgets that are entering the fourth — and probably worst — year of fiscal crisis.

The result is a messy situation chock full of contradictions. One of the federal law’s milestones for 2011 is for states to decide whether and how to launch their own health insurance exchanges. Every state but Alaska has begun planning to that end — even as 20 states continue fighting the federal law in court. Meanwhile, the budget crisis gives most states no choice but to try and squeeze cost savings out of Medicaid. Simultaneously, states will be deciding whether to deny costly services to Medicaid patients — as Arizona already has done with organ transplants — even as they plot a course toward universal coverage.

If there's one thing nearly all of the nation’s governors agree on, it's that they’d like more flexibility from Washington on how to meet the massive health care demands they’re now faced with. Although even the concept of flexibility means different things to different governors.

Many governors want flexibility to cut their Medicaid rolls by limiting who is eligible. That’s a strategy that states have used to weather previous recessions, but provisions in the federal health care law, as well as the economic stimulus law, prevent them from doing it now. Last week, all 29 Republican governors who will hold office this year signed a letter to President Obama and congressional leaders asking them to drop that restriction.

Other governors mean something else entirely when they talk about flexibility. For example, Oregon’s Democratic governor, John Kitzhaber, wants to be able to spend more Medicaid dollars on strategies that keep people healthy rather than waiting until they’re sick to treat them. In a recent interview with Stateline, he cited the hypothetical example of an elderly woman with congestive heart failure living in an apartment without air conditioning. A heat wave could send that woman to the hospital, Kitzhaber says.

The system today will pay for an ambulance to take her to the hospital and $50,000 to cure her,” Kitzhaber says. “It won’t pay $500 for a window air conditioner, which is really all she needs to stay in her home and out of the acute medical system.”

Medicaid economics

Last year, at a time when states made severe cuts in many programs, Medicaid spending grew by 8.2 percent. Medicaid has surpassed K-12 education as the largest portion of state budgets.

On average, the federal government pays 54 percent of all Medicaid bills; for poor states the federal share can be as high as 84 percent. Although states complain about the strings attached to Medicaid, no other federal program pumps as much money into state economies. According to the National Association of State Budget Officers, Medicaid accounts for nearly 43 percent of all federal dollars flowing into states.

The federal stimulus program added another $137 billion to state Medicaid coffers to help make up budget shortfalls in 2009 and 2010. Last fall, Congress extended a scaled down version of the subsidy worth $25 billion more, but that help gradually dissipates this year until it runs out entirely at the end of June.

When it’s finally gone, states will have to find a way to replace about $60 billion for the coming budget year. That pressure comes at a time when the weak economy and high unemployment rate have driven Medicaid enrollment to a record high.

Faced with this dire budget situation, states in 2011 are likely to turn to two places to cut Medicaid costs. Neither of them are particularly desirable.

Key dates for health care reform
*Includes information from Kaiser Family Foundation health care timeline.

One is payments to doctors and hospitals. States already have substantially cut back on reimbursement rates over the past two years, however. If fees go much lower in some states, health care providers will stop seeing Medicaid patients. Many doctors and hospitals already have fled the program.

The other thing states can cut is the types of services they cover. South Carolina, for example, plans to stop providing hospice care for the terminally ill. Massachusetts will no longer pay for dentures. North Carolina has stopped covering surgery for the clinically obese. In Texas and Nevada, lawmakers have toyed with the idea of dropping out of the Medicaid program altogether.

The problem is, nearly every state has cut their Medicaid programs to the marrow over the past two years, says Joy Johnson Wilson of the National Conference of State Legislatures. “States are in a real bind,” she says. “Poor states that don’t have any optional benefits to cut have nowhere to go.”

The best scenario for states is that Medicaid rolls will gradually go down as the economy continues to recover and more of the unemployed get back to work, says Alan Weil, director of the National Academy of State Health Policy. Some also hope that as provisions of the federal health care law take hold, it will ease some of the burden on Medicaid. For example, small business tax breaks may push more employers to offer health insurance; kids up to age 26 may stay on their parent’s insurance policies; and previously uninsurable people may sign up for new high-risk insurance policies.

The federal government is also offering grants to states to improve the efficiency of their health care systems. For example, the U.S. Department of Health and Human Services late last year awarded millions of dollars in demonstration grants to several states to pursue what is known as “medical homes” — a method of coordinating medical services that has been shown to improve health outcomes by accounting for all aspects of a person’s health and lifestyle.

Insurance exchanges

Compared to their budget dilemmas, the decisions states must make about implementing health care reform seem relatively easy. The first agenda item is to decide whether or not to run a health insurance exchange — a virtual marketplace that would allow individuals and small businesses to compare public and private policies and premiums. Democratic governors see insurance exchanges as an opportunity to improve consumer choice and, in many cases, to update their legacy Medicaid information systems. Many Republican governors have signed on to the idea as well, with several conceding that the idea is worth pursuing even if the federal health care law is overturned.

The most controversial decision states will face in designing their exchanges will be whether to create an open, unfettered marketplace such as one already adopted in Utah. Another option is to negotiate prices and more tightly control the insurance industry, as Massachusetts has done under its three-year-old health care reform program.

Other decisions, such as whether to run the exchange through a state agency, a nonprofit or an independent commission also will require some deliberation this year. In many states, the biggest challenge in designing an insurance exchange will be finding the staff to do it after two years of widespread state government layoffs and furloughs.

The good news for states is that the federal government will pay the full cost of developing insurance exchanges. Once the exchange is up and running, however, states will be on their own.

Experts predict most, if not all, states will choose to develop their own exchanges — that’s a decision that will require legislatures to pass a law to initiate. The alternative is to relinquish regulatory control over the state’s insurance market. So far, every state except Alaska has accepted a $1 million federal grant to do planning work related to the exchanges.

The next step will be for states to submit proposals and get federal project funding starting in March. Then will come the usual challenges of putting together a brand new program. Small states will be challenged to pull together a large enough pool of providers to successfully bid for low premiums. Meanwhile, large states may find the enormity of the project and the short time frame daunting. A federal audit of the state exchanges is scheduled for 2013.

Even as states implement the exchanges, however, the backlash against the federal law is bound to go on. The key flash point is the individual mandate. In addition to Arizona, six states — Georgia, Idaho, Louisiana, Missouri, Oklahoma and Virginia — already have approved laws or constitutional amendments making it illegal to require anyone to purchase an insurance policy.

More states are expected to take up the issue this year, according to the American Legislative Exchange Council, which developed model legislation aimed at blocking implementation of national health care reform. In addition, the states’ lawsuits claiming that Congress and the Obama administration overstepped their authority by requiring individuals to purchase health insurance will continue moving through federal courts. Most observers expect the U.S. Supreme Court will eventually weigh in on the matter.

Opponents and supporters of the health care law agree that if the individual mandate were struck down, most other aspects of its approach to achieving near universal coverage also would unravel. For states, that would mean that the debate over whether or how to change the health care system would begin all over again.

Contact Christine Vestal at

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Hemophilia Federation of America » Legislative Action Center

Hemophilia Federation of America » Legislative Action Center

HFA Friday Update - January 14, 2011

Heath Care Reform
The U.S. House of Representatives will resume activity on health care reform and have scheduled a vote on H.R. 2, a bill to repeal the Affordable Care Act, for next Wednesday, January 19. This bill will repeal a number of provisions that are important to the comprehensive health care of individuals with bleeding disorders, including:
  • No lifetime dollar limits and restrictions on annual dollar limits
  • Children can stay on their parents policy until the age of 26
  • No preexisting condition exclusion for children
  • No recessions of coverage
  • No deductible or cost sharing for preventative visits
  • No higher co-pay or higher co-insurance rates for out of network emergency services
Take Action Now! Your Member of Congress might be newly elected or may need a reintroduction to bleeding disorders. Use HFA’s Legislative Action Center to find and contact your legislator.
Be concise and tell your story! Why is health care reform important to you and your family? There is no better time than the present to tell your story and make sure your representative knows what’s important to you!
HHS issues new strategic framework on multiple chronic conditions
The U.S. Department of Health and Human Services today issued its new Strategic Framework on Multiple Chronic Conditions, a private-public sector collaboration to coordinate responses to a growing challenge. The health care system is largely designed to treat one disease or condition at a time, but many Americans have more than one ― and often several ― chronic conditions... Read More
Institute of Medicine (IOM) Hears from Stakeholders on Essential Benefits
IOM has entered the next phase of this process and will be holding a serious of public meetings to hear from various stakeholders regarding essential benefits. The first meeting took place this week January 12 -14, 2011 and covered numerous topics within essential health benefits...Read More
Kaiser Family Foundation Releases 50 State Survey of Medicaid and CHIP
The annual 50-state survey of Medicaid and CHIP eligibility rules, enrollment and renewal procedures and cost sharing practices, conducted by the Kaiser Commission on Medicaid and the Uninsured with the Georgetown University Center for Children and Families. To read the study visit the foundation's website.
Insurance premium hikes to face heightened federal scrutiny
The Obama administration has proposed that some individual and small-group insurers seeking to increase plan premiums by 10% or more starting in 2011 must disclose publicly the justification for doing so and possibly face intervention from state insurance regulators... Read More

Hemophilia Federation of America » Legislative Action Center

Hemophilia Federation of America » Legislative Action Center

Look and Learn.

Saturday, January 15, 2011

This is a Copy of the Letter Sent to Me By Adrian "ADI" in Romania.

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My child in Romania that I sponsor. I will post the letter he sent me. His name is Adrian.

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My Birthday with Kim Bernsteing in Washington, D.C.

Living with Hemophilia Today: How many people calling a member of Congress does ...

Living with Hemophilia Today: How many people calling a member of Congress does ...: "It takes 3 to 4 people to call a member of Congress to make them change their vote or to educate them on what they think. You can see ..."

How many people calling a member of Congress does it take to sway their vote or make them change how they feel about a bill?

It takes 3 to 4 people to call a member of Congress to make them change their vote or to educate them on what they think.  You can see how important it is that you get out there when a bill is put up to educate your members in Congress on legislation.  They have so many bills coming at them they are all not able to read and understand what is written in each bill.  These bills affect US!

How Do you Contact your Members of COngress to educate them about Hemophilia? Here is How!

Make a difference in just 5 minutes. That's all it will take to learn the issues and send a letter to Congress. The actions of our government have an enormous impact, so please educate yourself and take action.  Click here to sign up for our mailing list and we will keep you informed when you can make a difference.

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Hemophilia Federation of America » Legislative Action Center

Hemophilia Federation of America » Legislative Action Center

Bookmark and Share
Take Action Educate your member of Congress!
Take Action Now!

The U.S. House of Representatives will resume activity on health care reform and have scheduled a vote on H.R. 2, a bill to repeal the Affordable Care Act, for next Wednesday, January 19. This bill will repeal a number of provisions that are important to the comprehensive health care of individuals with bleeding disorders, including:
  • No lifetime dollar limits and restrictions on annual dollar limits
  • Children can stay on their parents policy until the age of 26
  • No preexisting condition exclusion for children
  • No recessions of coverage
  • No deductible or cost sharing for preventative visits
  • No higher co-pay or higher co-insurance rates for out of network emergency services

Take Action Now! Your Member of Congress might be newly elected or may need a reintroduction to bleeding disorders. Use HFA's Legislative Action Center to find and contact your legislator. Be concise and tell your story!

Why is health care reform important to you and your family? There is no better time than the present to tell your story and make sure your representative knows what's important to you!

Go to this site now to learn.

Hemophilia Federation of America » Legislative Action Center

Hemophilia Federation of America » Legislative Action Center

Friday, January 14, 2011

Hemophilia Federation of America » Legislative Action Center

Hemophilia Federation of America » Legislative Action Center

Educate your member of Congress!
Take Action Now!

The U.S. House of Representatives will resume activity on health care reform and have scheduled a vote on H.R. 2, a bill to repeal the Affordable Care Act, for next Wednesday, January 19. This bill will repeal a number of provisions that are important to the comprehensive health care of individuals with bleeding disorders, including:
  • No lifetime dollar limits and restrictions on annual dollar limits
  • Children can stay on their parents policy until the age of 26
  • No preexisting condition exclusion for children
  • No recessions of coverage
  • No deductible or cost sharing for preventative visits
  • No higher co-pay or higher co-insurance rates for out of network emergency services

Take Action Now! Your Member of Congress might be newly elected or may need a reintroduction to bleeding disorders. Use HFA's Legislative Action Center to find and contact your legislator. Be concise and tell your story!

Why is health care reform important to you and your family? There is no better time than the present to tell your story and make sure your representative knows what's important to you!

Hemophilia Federation of America » Legislative Action Center

Hemophilia Federation of America » Legislative Action Center

Gmail - HFA Friday Update - January 14, 2011 -

Gmail - HFA Friday Update - January 14, 2011 -

Haemophilia - Wikipedia, the free encyclopedia General look and education about what Hemophilia is!

Haemophilia - Wikipedia, the free encyclopedia


From Wikipedia, the free encyclopedia
Jump to: navigation, search
Classification and external resources

Deficiency in coagulation factor VIII is the most common cause of haemophilia.
ICD-10 D66.-D68.
ICD-9 286
OMIM 306700 306900 264900
DiseasesDB 5555 5561 29376
MedlinePlus 000537
eMedicine med/3528
MeSH D025861
Haemophilia (also spelled hemophilia in North America, from the Greek haima αἷμα 'blood' and philia φιλος 'love'[1]) is a group of hereditary genetic disorders that impair the body's ability to control blood clotting or coagulation, which is used to stop bleeding when a blood vessel is broken. Haemophilia A (clotting factor VIII deficiency) is the most common form of the disorder, occurring at about 1 in 5,000–10,000 male births.[2] Haemophilia B (factor IX deficiency) occurs at about 1 in about 20,000–34,000 male births.
Like most recessive sex-linked, X chromosome disorders, haemophilia is more likely to occur in males than females. This is because females have two X chromosomes while males have only one, so the defective gene is guaranteed to manifest in any male who carries it. Because females have two X chromosomes and haemophilia is rare, the chance of a female having two defective copies of the gene is very low, so females are almost exclusively asymptomatic carriers of the disorder. Female carriers can inherit the defective gene from either their mother or father, or it may be a new mutation. Only under rare circumstances do females actually have haemophilia.
Haemophilia lowers blood plasma clotting factor levels of the coagulation factors needed for a normal clotting process. Thus when a blood vessel is injured, a temporary scab does form, but the missing coagulation factors prevent fibrin formation, which is necessary to maintain the blood clot. A haemophiliac does not bleed more intensely than a normal person, but can bleed for a much longer time. In severe haemophiliacs even a minor injury can result in blood loss lasting days or weeks, or even never healing completely. In areas such as the brain or inside joints, this can be fatal or permanently debilitating.



[edit] Signs and symptoms

Characteristic symptoms vary with severity. In general symptoms are internal or external bleeding episodes, which are called "bleeds".[3][4] Patients with more severe haemophilia suffer more severe and more frequent bleeds, while patients with mild haemophilia typically suffer more minor symptoms except after surgery or serious trauma. Moderate haemophiliacs have variable symptoms which manifest along a spectrum between severe and mild forms.
Prolonged bleeding and re-bleeding are the diagnostic symptoms of haemophilia. Internal bleeding is common in people with severe haemophilia and some individuals with moderate haemophilia. The most characteristic type of internal bleed is a joint bleed where blood enters into the joint spaces.[5] This is most common with severe haemophiliacs and can occur spontaneously (without evident trauma). If not treated promptly, joint bleeds can lead to permanent joint damage and disfigurement.[5] Bleeding into soft tissues such as muscles and subcutaneous tissues is less severe but can lead to damage and requires treatment.
Children with mild to moderate haemophilia may not have any signs or symptoms at birth especially if they do not undergo circumcision. Their first symptoms are often frequent and large bruises and haematomas from frequent bumps and falls as they learn to walk. Swelling and bruising from bleeding in the joints, soft tissue, and muscles may also occur. Children with mild haemophilia may not have noticeable symptoms for many years. Often, the first sign in very mild haemophiliacs is heavy bleeding from a dental procedure, an accident, or surgery. Females who are carriers usually have enough clotting factors from their one normal gene to prevent serious bleeding problems, though some may present as mild haemophiliacs.

[edit] Complications

Severe complications are much more common in severe and moderate haemophiliacs. Complications may be both directly from the disease or from its treatment:[6]
  • Deep internal bleeding, e.g. deep-muscle bleeding, leading to swelling, numbness or pain of a limb.
  • Joint damage from haemarthrosis, potentially with severe pain, disfigurement, and even destruction of the joint and development of debilitating arthritis.
  • Transfusion transmitted infection from blood transfusions that are given as treatment.
  • Adverse reactions to clotting factor treatment, including the development of an immune inhibitor which renders factor replacement less effective.
  • Intracranial haemorrhage is a serious medical emergency caused by the buildup of pressure inside the skull. It can cause disorientation, nausea, loss of consciousness, brain damage, and death.

[edit] Life expectancy

Like most aspects of the disorder, life expectancy varies with severity and adequate treatment. People with severe haemophilia who don't receive adequate, modern treatment have greatly shortened lifespans and often do not reach maturity. Prior to the 1960s when effective treatment became available, average life expectancy was only 11 years.[5] By the 1980s the life span of the average haemophiliac receiving appropriate treatment was 50–60 years.[5] Today with appropriate treatment, males with haemophilia typically have a near normal quality of life with an average lifespan approximately 10 years shorter than an unaffected male.[7]
Since the 1980s the primary leading cause of death of people with severe haemophilia has shifted from haemorrhage to HIV/AIDS acquired through treatment with contaminated blood products.[5] The second leading cause of death related to severe haemophilia complications is intracranial haemorrhage which today accounts for one third of all deaths of patients with haemophilia. Two other major causes of death include: hepatitis infections causing cirrhosis and, obstruction of air or blood flow due to soft tissue haemorrhage.[5]

[edit] Causes

  • Haemophilia A is a recessive X-linked genetic disorder involving a lack of functional clotting Factor VIII and represents 80% of haemophilia cases.
  • Haemophilia B is a recessive X-linked genetic disorder involving a lack of functional clotting Factor IX. It comprises approximately 20% of haemophilia cases.[8]
  • Haemophilia C is an autosomal genetic disorder (i.e. not X-linked) involving a lack of functional clotting Factor XI. Haemophilia C is not completely recessive: heterozygous individuals also show increased bleeding.[9]

[edit] Genetics

X-linked recessive inheritance
Females possess two X-chromosomes, males have one X and one Y chromosome. Since the mutations causing the disease are X-linked, a woman carrying the defect on one of her X-chromosomes may not be affected by it, as the equivalent allele on her other chromosome should express itself to produce the necessary clotting factors, due to X inactivation. However, the Y-chromosome in men has no gene for factors VIII or IX. If the genes responsible for production of factor VIII or factor IX present on a male's X-chromosome are deficient there is no equivalent on the Y-chromosome to cancel it out, so the deficient gene is not masked and he will develop the illness.
Since a male receives his single X-chromosome from his mother, the son of a healthy female silently carrying the deficient gene will have a 50% chance of inheriting that gene from her and with it the disease; and if his mother is affected with haemophilia, he will have a 100% chance of being a haemophiliac. In contrast, for a female to inherit the disease, she must receive two deficient X-chromosomes, one from her mother and the other from her father (who must therefore be a haemophiliac himself). Hence haemophilia is far more common among males than females. However, it is possible for female carriers to become mild haemophiliacs due to lyonisation (inactivation) of the X chromosomes. Haemophiliac daughters are more common than they once were, as improved treatments for the disease have allowed more haemophiliac males to survive to adulthood and become parents. Adult females may experience menorrhagia (heavy periods) due to the bleeding tendency. The pattern of inheritance is criss-cross type. This type of pattern is also seen in colour blindness.
A mother who is a carrier has a 50% chance of passing the faulty X chromosome to her daughter, while an affected father will always pass on the affected gene to his daughters. A son cannot inherit the defective gene from his father.
Genetic testing and genetic counselling is recommended for families with haemophilia. Prenatal testing, such as amniocentesis, is available to pregnant women who may be carriers of the condition.
As with all genetic disorders, it is of course also possible for a human to acquire it spontaneously through mutation, rather than inheriting it, because of a new mutation in one of their parents' gametes. Spontaneous mutations account for about 33% of all cases of haemophilia A. About 30% of cases of haemophilia B are the result of a spontaneous gene mutation.
If a female gives birth to a haemophiliac child, either the female is a carrier for the disease or the haemophilia was the result of a spontaneous mutation. Until modern direct DNA testing, however, it was impossible to determine if a female with only healthy children was a carrier or not. Generally, the more healthy sons she bore, the higher the probability that she was not a carrier.
If a male is afflicted with the disease and has children with a female who is not even a carrier, his daughters will be carriers of haemophilia. His sons, however, will not be affected with the disease. The disease is X-linked and the father cannot pass haemophilia through the Y chromosome. Males with the disorder are then no more likely to pass on the gene to their children than carrier females, though all daughters they sire will be carriers and all sons they father will not have haemophilia (unless the mother is a carrier).

[edit] Severity

There are numerous different mutations which cause each type of haemophilia. Due to differences in changes to the genes involved, patients with haemophilia often have some level of active clotting factor. Individuals with less than 1% active factor are classified as having severe haemophilia, those with 1-5% active factor have moderate haemophilia, and those with mild haemophilia have between 5-40% of normal levels of active clotting factor.[5]

[edit] Diagnosis

Haemophilia A can be mimicked by von Willebrand disease.
  • von Willebrand Disease could significantly affect as many as 1 in 10,000 people.[10]
  • von Willebrand Disease type 2A, where decreased levels of von Willebrand Factor can lead to premature proteolysis of Factor VIII. In contrast to haemophilia, vWD type 2A is inherited in an autosomal dominant fashion.
  • von Willebrand Disease type 2N, where von Willebrand Factor cannot bind Factor VIII, autosomal recessive inheritance. (i.e.; both parents need to give the child a copy of the gene).
  • von Willebrand Disease type 3, where lack of von Willebrand Factor causes premature proteolysis of Factor VIII. In contrast to haemophilia, vWD type 3 is inherited in an autosomal recessive fashion.
Additionally, severe cases of vitamin K deficiency can present similar symptoms to haemophilia. This is due to the fact that vitamin K is necessary for the human body to produce several protein clotting factors. This vitamin deficiency is rare in adults and older children but is common in newborns. Infants are born with naturally low levels of vitamin K and do not yet have the symbiotic gut flora to properly synthesise their own vitamin K. Bleeding issues due to vitamin K deficiency in infants is known as "haemorrhagic disease of the newborn", to avoid this complication newborns are routinely injected with vitamin K supplements.
Condition↓ Prothrombin time↓ Partial thromboplastin time↓ Bleeding time↓ Platelet count↓
Vitamin K deficiency or warfarin prolonged prolonged unaffected unaffected
Disseminated intravascular coagulation prolonged prolonged prolonged decreased
Von Willebrand disease unaffected prolonged prolonged unaffected
Haemophilia unaffected prolonged unaffected unaffected
Aspirin unaffected unaffected prolonged unaffected
Thrombocytopenia unaffected unaffected prolonged decreased
Early Liver failure prolonged unaffected unaffected unaffected
End-stage Liver failure prolonged prolonged prolonged decreased
Uremia unaffected unaffected prolonged unaffected
Congenital afibrinogenemia prolonged prolonged prolonged unaffected
Factor V deficiency prolonged prolonged unaffected unaffected
Factor X deficiency as seen in amyloid purpura prolonged prolonged unaffected unaffected
Glanzmann's thrombasthenia unaffected unaffected prolonged unaffected
Bernard-Soulier syndrome unaffected unaffected prolonged decreased

[edit] Management

Commercially produced factor concentrates such as "Advate", a recombinant Factor VIII produced by Baxter International, come as a white powder in a vial which must be mixed with sterile water prior to intravenous injection.
Though there is no cure for haemophilia, it can be controlled with regular infusions of the deficient clotting factor, i.e. factor VIII in haemophilia A or factor IX in haemophilia B. Factor replacement can be either isolated from human blood serum, recombinant, or a combination of the two. Some haemophiliacs develop antibodies (inhibitors) against the replacement factors given to them, so the amount of the factor has to be increased or non-human replacement products must be given, such as porcine factor VIII.
If a patient becomes refractory to replacement coagulation factor as a result of circulating inhibitors, this may be partially overcome with recombinant human factor VII (NovoSeven), which is registered for this indication in many countries.
In early 2008, the US Food and Drug Administration (FDA) approved Xyntha (Wyeth) anti-haemophilic factor, genetically engineered from the genes of Chinese hamster ovary cells. Since 1993 (Dr. Mary Nugent) recombinant factor products (which are typically cultured in Chinese hamster ovary (CHO) tissue culture cells and involve little, if any human plasma products) have been available and have been widely used in wealthier western countries. While recombinant clotting factor products offer higher purity and safety, they are, like concentrate, extremely expensive, and not generally available in the developing world. In many cases, factor products of any sort are difficult to obtain in developing countries.
In Western countries, common standards of care fall into one of two categories: prophylaxis or on-demand. Prophylaxis involves the infusion of clotting factor on a regular schedule in order to keep clotting levels sufficiently high to prevent spontaneous bleeding episodes. On-demand treatment involves treating bleeding episodes once they arise. In 2007, a clinical trial was published in the New England Journal of Medicine comparing on-demand treatment of boys (< 30 months) with haemophilia A with prophylactic treatment (infusions of 25 IU/kg body weight of Factor VIII every other day) in respect to its effect on the prevention of joint-diseases. When the boys reached 6 years of age, 93% of those in the prophylaxis group and 55% of those in the episodic-therapy group had a normal index joint-structure on MRI.[11] Prophylactic treatment, however, resulted in average costs of $300,000 per year. The author of an editorial published in the same issue of the NEJM supports the idea that prophylactic treatment not only is more effective than on demand treatment but also suggests that starting after the first serious joint-related haemorrhage may be more cost effective than waiting until the fixed age to begin.[12] This study resulted in the first (October 2008) FDA approval to label any Factor VIII product to be used prophylactically.[13] As a result, the factor product used in the study (Bayer's Kognate) is now labelled for use to prevent bleeds, making it more likely that insurance carries in the US will reimburse consumers who are prescribed and use this product prophylactically. Despite Kognate only recently being "approved" for this use in the US, it and other factor products have been well studied and are often prescribed to treat Haemophilia prophylactically to prevent bleeds, especially joint bleeds.[14]

[edit] Preventive exercises

It is recommended that people affected with haemophilia do specific exercises to strengthen the joints, particularly the elbows, knees, and ankles.[15] Exercises include elements which increase flexibility, tone, and strength of muscles, increasing their ability to protect joints from damaging bleeds. These exercises are recommended after an internal bleed occurs and on a daily basis to strengthen the muscles and joints to prevent new bleeding problems. Many recommended exercises include standard sports warm-up and training exercises such as stretching of the calves, ankle circles, elbow flexions, and quadriceps sets.

[edit] Alternative medicine

While not a replacement for traditional treatments, preliminary scientific studies indicate that hypnosis and self-hypnosis can be effective at reducing bleeds and the severity of bleeds and thus the frequency of factor treatment.[16][17][18][19] Herbs which strengthen blood vessels and act as astringents may benefit patients with haemophilia, however there are no peer reviewed scientific studies to support these claims. Suggested herbs include: Bilberry (Vaccinium myrtillus), Grape seed extract (Vitis vinifera), Scotch broom (Cytisus scoparius), Stinging nettle (Urtica dioica), Witch hazel (Hamamelis virginiana), and yarrow (Achillea millefolium).[16]

[edit] Contraindications

Anticoagulants such as Heparin and Warfarin are contraindicated for people with haemophilia as these can aggravate clotting difficulties. Also contraindicated are those drugs which have "blood thinning" side effects. For instance, medications which contain aspirin, ibuprofen, or naproxen sodium should not be taken because they are well known to have the side effect of prolonged bleeding.[20]
Also contraindicated are activities with a high likelihood of trauma, such as motorcycling and skateboarding. Popular sports with very high rates of physical contact and injuries such as American football, hockey, boxing, wrestling, and rugby should be avoided by people with haemophilia.[20][21] Other active sports like soccer, baseball, and basketball also have a high rate of injuries, but have overall less contact and should be undertaken cautiously and only in consultation with a doctor.[20]

[edit] Epidemiology

Haemophilia is rare, with only about 1 instance in every 10,000 births (or 1 in 5,000 male births) for haemophilia A and 1 in 50,000 births for haemophilia B.[22] About 18,000 people in the United States have haemophilia. Each year in the US, about 400 babies are born with the disorder. Haemophilia usually occurs in males and less often in females.[23] It is estimated that about 2500 Canadians have haemophilia A, and about 500 Canadians have haemophilia B.[24]

[edit] History

"About seventy or eighty years ago, a woman by name of Smith, settled in the vicinity of Plymouth, New Hampshire, and transmitted the following idiosyncrasy to her descendants. It is one, she observed, to which her family is unfortunately subject, and had been the source not only of great solicitude, but frequently the cause of death. If the least scratch is made on the skin of some of them, as mortal a hemorrhagy will eventually ensue as if the largest wound is inflicted. (…) So assured are the members of this family of the terrible consequences of the least wound, that they will not suffer themselves to be bled on any consideration, having lost a relation by not being able to stop the discharge occasioned by this operation."
John C. Otto, 1803[25]

[edit] Scientific discovery

The first written account of haemophilia occurred in the 2nd century in the Babylonian Talmud. In it Rabbi Judah haNasi, redactor of the Mishneh, wrote: "If she circumcised her first child and he died, and a second one also died, she must not circumcise her third child." This passage refers to both the prolonged bleeding caused by circumcision and to the maternal inheritance of the disease.[26] The first medical professional to describe a disease was Albucasis. In the tenth century he described families whose males died of bleeding after only minor traumas.[27] While many other such descriptive and practical references to the disease appear throughout historical writings, scientific analysis did not begin until the start of the nineteenth century.
In 1803, Dr. John Conrad Otto, a Philadelphian physician, wrote an account about "a hemorrhagic disposition existing in certain families" in which he called the affected males "bleeders."[28] He recognised that the disorder was hereditary and that it affected mostly males and was passed down by healthy females. His paper was the second paper to describe important characteristics of an X-linked genetic disorder (the first paper being a description of colour blindness by John Dalton who studied his own family). Otto was able to trace the disease back to a woman who settled near Plymouth in 1720. The idea that affected males could pass the trait onto their unaffected daughters was not described until 1813 when John Hay published an account in The New England Journal of Medicine.[29][30]
A Finnish Doctor in 1924 discovered a heredity bleeding disorder similar to Haemophilia localised in a group of islands (called the "Aland Islands") which are located to the southwest of Finland. This bleeding disorder is called "Von Willebrand Disease".
The term "haemophilia" is derived from the term "haemorrhaphilia" which was used in a description of the condition written by Friedrich Hopff in 1828, while he was a student at the University of Zurich.[28][31] In 1937, Patek and Taylor, two doctors from Harvard, discovered anti-haemophilic globulin.[26] In 1947, Pavlosky, a doctor from Buenos Aires, found haemophilia A and haemophilia B to be separate diseases by doing a lab test. This test was done by transferring the blood of one haemophiliac to another haemophiliac. The fact that this corrected the clotting problem showed that there was more than one form of haemophilia.

[edit] European royalty

Queen Victoria passed haemophilia on to some of her descendants.
Haemophilia has featured prominently in European royalty and thus is sometimes known as "the royal disease". Queen Victoria passed the mutation to her son Leopold and, through some of her daughters, to various royals across the continent, including the royal families of Spain, Germany, and Russia. In Russia, Tsarevich Alexei Nikolaevich, son of Nicholas II, was a descendant of Queen Victoria through his mother Empress Alexandra and suffered from haemophilia.
Ryan White was an American haemophiliac who became infected with HIV/AIDS through contaminated blood products.
It was claimed that Rasputin was successful at treating the Tsarevich's haemophilia. At the time, a common treatment administered by professional doctors was to use aspirin, which worsened rather than lessened the problem. It is believed that, by simply advising against the medical treatment, Rasputin could bring visible and significant improvement to the condition of Alexei.
In Spain, Queen Victoria's youngest daughter, Princess Beatrice, had a daughter Victoria Eugenie of Battenberg, who later became Queen of Spain. Two of her sons were haemophiliacs and both died from minor car accidents: Her eldest son, Prince Alfonso of Spain, Prince of Asturias, died at the age of 31 from internal bleeding after his car hit a telephone booth. Her youngest son, Infante Gonzalo, died at age 19 from abdominal bleeding following a minor car accident where he and his sister hit a wall while avoiding a cyclist. Neither appeared injured or sought immediate medical care and Gonzalo died two days later from internal bleeding.

[edit] Blood contamination issues

Prior to 1985, there were no laws enacted within the U.S. to screen blood. As a result, many haemophilia patients who received untested and unscreened clotting factor prior to 1992 were at an extreme risk for contracting HIV and hepatitis C via these blood products. It is estimated that more than 50% of the haemophilia population, over 10,000 people, contracted HIV from the tainted blood supply in the United States alone.[32]
As a direct result of the contamination of the blood supply in the late 1970s and early/mid 1980s with viruses such as hepatitis and HIV, new methods were developed in the production of clotting factor products. The initial response was to heat-treat (pasteurise) plasma-derived factor concentrate, followed by the development of monoclonal factor concentrates, which use a combination of heat treatment and affinity chromatography to inactivate any viral agents in the pooled plasma from which the factor concentrate is derived. The Lindsay Tribunal in Ireland investigated, among other things, the slow adoption of the new methods.

[edit] See also

[edit] References

  1. ^ Douglas Harper. "Online Etymology Dictionary". Retrieved 2007-10-10. 
  2. ^ "Hemophilia B". Retrieved 2007-11-21. 
  3. ^ Types of Bleeds National Hemophilia Federation.
  4. ^ Key facts: what is haemophilia? The Haemophilia Society.
  5. ^ a b c d e f g Hemophilia Overview eMedicine from webMD. Dimitrios P Agaliotis, MD, PhD, FACP, Robert A Zaiden, MD, Fellow, and Saduman Ozturk, PA-C. Updated: Nov 24, 2009.
  6. ^ Hemophilia Complications By Mayo Clinic Staff. May 16, 2009
  7. ^ World Federation of Hemophilia Frequently Asked Questions. 2005
  8. ^
  9. ^ Prasad Mathew, MBBS, DCH, eMedicine - Hemophilia C
  10. ^ "Molecular basis of von Willebrand disease and its clinical implications". Haematologica 89 (9): 1036. 1 September 2004. PMID 15377463. 
  11. ^ Manco-Johnson MJ, Abshire TC, Shapiro AD, et al. (2007). "Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia". N. Engl. J. Med. 357 (6): 535–44. doi:10.1056/NEJMoa067659. PMID 17687129. 
  12. ^ Roosendaal G, Lafeber F (2007). "Prophylactic treatment for prevention of joint disease in hemophilia—cost versus benefit". N. Engl. J. Med. 357 (6): 603–5. doi:10.1056/NEJMe078098. PMID 17687136. 
  13. ^ Kognate Product Approval Information USDA Center for Biologics Evaluation and Research.
  14. ^ Hayes, P. 2009. FDA Approves Kognate For Prophylaxis. Hemaware: the bleeding disorder's magazine. Hemophilia Foundation. March/April 2009. Vol 14, Issue 2. p. 18.
  15. ^ Mulder, K. 2006. Exercises for People with Hemophilia. World Federation of Hemophilia.
  16. ^ a b University of Maryland Medical Center Complementary medicines: Hemophilia
  17. ^ New York Times, Science Watch; Hypnosis for Hemophiliacs May 6, 1986.
  18. ^ American Society of Clinical Hypnosis., Information for the General Public
  19. ^ David Spiegel 1994. Dissociation: Culture, Mind, and Body. American Psychiatric Pub. ISBN 0-88048-557-4, 9780880485579
  20. ^ a b c How to Deal with Hemophilia Reviewed by: Larissa Hirsch, MD 2007. by Nemours. Retrieved January 23, 2010.
  21. ^ "Playing it Safe: Bleeding Disorders, Sports and Exercise". Booklet. National Hemophilia Foundation.
  22. ^ World Federation of Hemophilia Frequently Asked Questions About Hemophilia
  23. ^ "U.S. National Library of Medicine". Retrieved 2007-12-02. 
  24. ^ Canadian Hemophilia Society FAQ
  25. ^ Otto JC. The Medical Repository. 1803;Vol VI (No 1):1-4.
  26. ^ a b Chapter 38 Coagulation Factors V and VIII by GC White and GE Gilbert in "Blood: principles and practice of hematology: 2nd edition" 2003. Eds. Robert I. Handin, Samuel E. Lux, Thomas P. Stossel. ISBN 978-0-7817-1993-3
  27. ^ Case of the Week 175 University of Utah Medical Library
  28. ^ a b Haemophilia--then and now Nilsson IM. Sydsven Medicinhist Sallsk Arsskr. 1994;31:33-52.
  29. ^ DIGITISED EARLY PAPERS AND BOOKS ON HUMAN AND MEDICAL GENETICS Genetics and Medicine Historical Network, Cardiff University.
  30. ^ Hay J (1813). "Account of a remarkable hæmorrhagic disposition, existing in many individuals of the same family". N Engl J Med Surg 2 (3): 221–5. 
  31. ^ "The History of hemophilia". Retrieved 2009-06-05. 
  32. ^ In re Rhone-Poulenc Rorer Inc., 51 F.3d 1293, 1296 (7th Cir. 1995),, Retrieved 2008-01-28

[edit] External links

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