AlphaMale

Alpha-1 sucks

It says so right here:

Alpha-1 Foundation - Finding the Cure from Alpha-1 Foundation on Vimeo.

Maybe Michael Jackson WAS an Alpha; he had chronic lung inflammation and reduced lung capacity -- just like us

Michael Jackson, at 50, had reduced lung capacity due to chronic inflammation, according to his autopsy report leaked to the Associated Press.

"His overall health was fine," said Zeev Kain, MD, chairman of the anesthesiology department at the University of California, Irvine. Kanin reviewed the autopsy report for the AP. "The results are within normal limits."

Except for that lung inflammation.

“It’s an unusual finding,” Kain said. “It looked like from the pathology report that he had this condition for years, but it’s very hard to know what the reason was.”

WHO HAS CHRONIC LUNG INFLAMMATION and reduced lung capacity?

ALPHAS, that's who.

Last winter, a writer known for gossip and scandal claimed Michael Jackson had Alpha-1. He didn't provide a shred of evidence. Didn't matter. The Web's full of postings that state it as a fact: Oh yeah, Michael had Alpha-1.

Well, there's still no evidence. (Other conditions can cause lung inflammation and lost lung function, too.) But the autopsy report certainly raised my eyebrows.

And made me wish someone had given Michael the simple test for Alpha-1.

To my knowledge, Jackson didn't smoke cigarettes, pot, or anything else. His addiction was prescription drugs. It was an anesthetic called Propofol mixed with three other sedatives that killed him. 

Obama's losing the health care reform campaign; there's only one way he can win it now

The Obama administration is losing the battle on health care reform where it counts most -- in what the American public is thinking and fearing.

Is it because this administration's health care reform plans are terrible, and deserve to lose on their merits?

Maybe so. I don 't think so.

I think it's because the administration took far too long to treat the health care reform campaign the same way, with the same tools, as Obama's election campaign. For months, this has been a propaganda war. Exactly like an election campaign.

When someone claims "death squads" are part of Obama's plans, there must be an immediate "truth squad" response. When someone makes a more reasonable criticism, that needs  to be answered, too -- reasonably, and rapidly.

Reality: Propaganda wars are conducted primarily on the Internet these days. Obama won the election by understanding this, and executing an all-out Internet election campaign better than it's ever been done.

The administration is trying to do that now.

Right here -- on the Web --  is where this battle is being decided.

You can live longer, get sick and hospitalized less often -- or you can get sick more, spend more time in the hospital and die sooner

Which one do you choose?

A study in the US Veterans Administration health care system found that I have a good chance to live longer and get sick less often, especially sick enough to be hospitalized, if I take my Spiriva and Advair.

That's because I have COPD (emphysema), my Alpha-1 lung disease.

As it happens, Spiriva and Advair are the two medications I take.

Lucky me.

The VA study involved more than 40,000 guys (98 percent were men) all with COPD, like me. Lots of people take different meds. Many take Spiriva along with two other meds.

That's OK if you take Spiriva with a combination called a long-acting beta agonist and an inhaled steroid. (There are other combos besides Advair.) But there are also different choices, and if you take them, the VA study found you're likely to get sick more often and die sooner.

Says the Archives of Internal Medicine:

"In contrast, when tiotropium (Spiriva) was combined with two other medications, the risk for mortality, exacerbations, and hospitalizations was increased."

What two other medications?

The Archives of Internal Medicine isn't saying. So you're left to guess.

Why in the world would the researchers hide the bad news?

My opinion: They're protecting the manufacturers of the drugs that can harm us.

Alpha-1 protein, the diabetes solution?

Two groups of researchers have reversed diabetes in mice by injecting them with Alpha-1 protein, or AAT.

AAT is the protein extracted from human blood plasma that we Alphas get infused into our veins to augment our own inadequate supply. It's intended to give us protection against the rapid loss of lung function that is common among Alphas.

AAT has several fine qualities, including being anti-inflammatory. (Since we're "deficient" in AAT, Alphas tend to have a lot of lung inflammation.)

So here's where diabetes comes in.

For years, it's been widely accepted that inflammation is one of the effects of Type 1 diabetes. Type 1 diabetes is the kind that can develop in the very young and brings the complete destruction of the insulin-producing cells in the pancreas, making insulin injections a lifetime necessity.

Now researchers are testing the theory that inflammation is a major cause, rather than a result, of diabetes. They injected diabetic mice with AAT. Inflammation was reduced, the insulin-producing cells in the pancreas weren't just saved, but apparently grew, and in some cases the mouse diabetes was completely cured.

Of course, they were mice. And a special breed of non-obese diabetic mice. But everybody's having visions of a breakthrough in human diabetes.

So far, no AAT studies in people with Type 1 diabetes have been announced.

2007: A very good year for Alpha-1

There are about 100,000 Alphas in America. Only about 7,000 have been diagnosed.

To find the rest, we've got to get people's attention. So how're we doing?

Actually, we're doing well. For Alpha-1 awareness, 2007 was our best year ever. Some of the great stuff that happened this year:

• The National Heart, Lung, and Blood Institute (NHLBI) awarded $37 million for what is called the "COPD gene study," which will test 11,500 people for genetic factors in COPD -- including Alpha-1 testing for every one.

• The Alpha-1 Foundation, in conjunction with the American Association for Respiratory Care, began a study of 5,000 COPD patients, to test them all for Alpha-1.

• When these studies are done, we'll know how many Alphas there are -- far more accurately than today's estimates.

• The NHLBI launched the Learn More Breathe Better campaign. It's intended to get better diagnosis and treatment for the millions of people with the lung diseases called COPD. The website and literature specifically mention Alpha-1 as the genetic cause of COPD.

• The New York Times carried a major front-page story on COPD. Two full pages ran inside the paper, mentioning Alpha1-1 as "the genetic disorder known to cause emphsema."

• In the last four months of the year, a man named Len Geiger became America's most famous Alpha, beginning with a September column by enormously popular Sports Illustrated columnist Rick Reilly.

• This was followed by a 15-minute segment just before Thanksgiving on HBO's Real Sports with Bryant Gumbel.

• Then just last Saturday, a feature on ABC World News. (To see a video of the broadcast segment, click on the photo of the two young girls at right.)

• Those are the highlights. Want more? Well, I have a feeling there'll be plenty in 2008

The bad break that wasn't

It's obvious the public is catching on to the fact that they're the ones paying monstrous health care bills for often worthless procedures..."

-- Candace Pert, The Molecules of Emotion

Margaret was visiting her daughter Angie in North Carolina when she had an accidental fall.

 Margaret is 79. Angie did the cautious thing and took her to the hospital emergency room. The doctors ordered an X-ray. Margaret had a fractured hip and needed surgery, they said, followed by six weeks in the hospital to recover.

But Angie was doubtful. Her mother has severe emphysema. She weighs 97 pounds; she's nearly 80 years old. Surely this was risky surgery for such a frail woman. What could justify it?

For 48 hours, Margaret got nothing to eat, because the doctors were pressing for immediate surgery. Finally they took no for an answer.

After five days, Margaret was sent home, with professionals coming in several days a week to rehabilitate the broken hip.

Margaret scared her daughter, because she wanted to walk around just like a normal person. What if she aggravated the fracture? Margaret isn't senile; she just didn't believe her hip was broken. From the beginning, she'd had no pain.

Weeks later, Angie and Margaret had a follow-up visit with the orthopedic specialist. Angie asked to see her mother's hip X-ray. There was no visible fracture.

Angie was upset. The doctor had the gall to say, "At least we prevented a potential fracture."

Angie can only guess what might have motivated the medical staff to press for surgery. This was a teaching hospital; she suspects orthopedic surgeons just out of medical school were eager to test their skills.

Whatever the reason, the doctors were willing to risk Margaret's life to operate on a non-existent hip fracture.

...Or C: You don't pay enough fees

So Jean got diagnosed,  got proper medication, got augmentation therapy.

She also got a new pulmonary doctor, who said he wanted to see Jean every two months. Since her health was stable, she was exercising regularly and having no setbacks of any kind, she didn't take this request seriously.

Two months later, her doctor sent her a message -- not directly, but through the nurse who was giving her Prolastin infusions.

This was the message:

Jean had an appointment with the doctor the following Monday at 11 am. (She hadn't scheduled any appointment.) If she didn't show up, her doctor would cancel her infusions and refuse to write prescriptions.

Faced with this blackmail, she showed up for the appointment. Since there were no new health issues to discuss, the main conversation topic was her anger at the doctor's dictatorial behavior.

Waste of time. He still insists on seeing her every two months, and still writes prescriptions for two months only, no renewals. The only apparent reason: to maximize fees for office visits.

She's switching doctors.

A: You're lying. Or B: You're neurotic.

In her middle 50s, Jean noticed she couldn't keep up with people at airports. She was short of breath a lot.

She never suspected a lung problem; after all, she never smoked. She guessed she might have heart disease. A specialist said her heart was fine. About two years and several more doctors later, she was told that X-rays showed "some cloudiness" in her lungs. The puzzled doctors suggested two possible diagnoses:

• She was lying about not smoking.
• She was neurotic.

A local internist was highly recommended. He was so popular it was hard to get an appointment with him. She begged. He saw her. Eventually he said, "There IS one more thing I can test you for..."

He wasn't a lung specialist, but he got it right: She had Alpha-1.

And more traction...

My body doesn't give my lungs enough Alpha-1 protein to keep the lungs healthy. That's why we say I have Alpha-1 Antitrypsin "Deficiency."

Only one way to fix my Deficiency: Pour more Alpha-1 protein into my blood. This is called Augmentation Therapy.

I augment my little protein supply with a weekly IV drip at home.

The protein comes from the donated blood of "normal" healthy people. Refined and purified, it costs an arm and a leg. My health insurance pays for it, thank you very much.

Three companies would love to sell me their own Augmentation Therapy:

• Baxter Healthcare, which makes Aralast.

• Talecris Biotherapeutics, which makes Prolastin, the one I use.

• ZLB Behring, which makes Zemaira.

These companies compete pretty hard.

I like this competition. It almost guarantees more testing, and therefore, more properly-diagnosed Alphas. Here's the most encouraging news I've heard on this subject.

    Of the people who begin taking Aralast, 86 percent are new to augmentation. Almost certainly, that means they're newly diagnosed. Most are probably among the 13,000 patients that Baxter has tested so far.

Competition helps.

(The data come from a Baxter rep at the Alpha-1 convention just held in San Diego.)