November 3rd, 2008 by Dr. Val Jones in Expert Interviews, Opinion
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Following on the heels of the annual ACR scientific assembly (and my interview with Dr. Wallace), I reached out to Sandra Raymond, President and Chief Executive Officer of the Lupus Foundation of America, to discuss lupus from the patient perspective. Sandra’s rhinovirus infection (she had a cold) did not stop her from completing an excellent interview with me.
Listen to the podcast here, or read a summary of the interview below.
Dr. Val: Tell me about the Lupus Foundation of America (LFA).
Raymond: The Lupus Foundation of America is the nation’s leading organization dedicated to finding the causes and cure for lupus. We also provide services, support, and hope to all people living with lupus. We have a national research program called “Bringing Down The Barriers” and we fund grants to researchers in academic institutions across the country. We are also very active on Capitol Hill, lobbying for research and educational efforts. In a few months we’ll be launching a public awareness campaign to help Americans understand this disease.
Dr. Val: Of which key accomplishment of the LFA are you most proud?
Raymond: LFA has been able to expand medical research efforts for lupus. This not only gets us closer to finding a cure, but it offers hope to those who are living with the disease.
Dr. Val: In your view, what do patients with lupus need the most?
Raymond: They need safe, effective, and well-tolerated treatments. November the 20th, 2008, marks 50 years without a new, approved treatment for lupus. The treatments that patients are currently taking can be very harsh. They sometimes cause side effects that are worse than lupus itself! We must step up our research efforts to discover safe and effective treatments to bring this disease under control and provide patients with a better quality of life.
The good news is that there are quite a few pioneering biotech companies who are investing money in finding a cure for lupus. So there may be new drugs on the horizon.
Autoimmune diseases affect 23 million Americans. Lupus accounts for at least 1 million of those, but if we can figure out what causes lupus, there are implications for all disorders of the immune system. Read more »
September 8th, 2008 by Dr. Val Jones in Uncategorized
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Last week I attended a press conference about healthcare reform at the National Press Club. The most interesting of the 4 speakers was Grace-Marie Turner, president of the Galen Institute. In a recent editorial in the Wall Street Journal, Ms. Turner argued that,
The complex problems in our health sector are best cured by a bigger dose of market competition, not more government intervention.
I had the chance to interview Ms. Turner after her lecture.
Dr. Val: You’ve said that “we’ve got to come to a uniquely American solution to our healthcare crisis.” What does that mean?
Ms. Turner: I speak a lot in Europe, and they really believe that we have a permanent underclass of 47 million people who never have access to our healthcare system. They imagine that they’re bleeding in the streets. We know that’s not the case. Everyone has access to healthcare through emergency rooms – but this is an inferior way to access healthcare. People end up getting treatment at the end of an illness rather than the beginning when things could be better treated, and it’s much more expensive. We need to solve the problem of health insurance.
The movement of “consumerism” is something the world is looking to us to figure out. In other countries their concept of “innovation” is adopting diagnostic codes and payment structures for a system of treatment. We’ve had that for over 20 years in America. When we talk about innovations we mean new ways to respond to consumer needs. The fact that we don’t have so many rules and regulations guiding the entire structure of the healthcare experience means that we can innovate. We can create diversity of care options.
Most of the major research-based pharmaceutical innovations occur in America because we don’t have price controls and we don’t have restrictions on access to care. These are unique aspects of the American healthcare system, and even though Europeans criticize us, they’re always looking to learn from us.
Dr. Val: Why are “medical homes” important?
Ms. Turner: In this increasingly complex healthcare system, people need to have a place to go where their care will be coordinated. That may be a physician’s practice, but it can also be an electronic medical home where people have their medical records kept in one place, and where they have access to different specialists that they can use to coordinate their care. The medical home is really a beacon for more accurate, coordinated and more productive use of our healthcare system.
Dr. Val: You mentioned that there is a “workforce crisis” in our healthcare system — that there are not enough primary care phsyicians to meet demands. Yet you also said that If people could buy health insurance across state lines we could solve a lot of the access issues. How can both be true?
Ms. Turner: It’s a chicken and egg problem. We’ve got to increase access to health insurance. We can’t have 45 million people feeling that they’re blocked from predictable access to healthcare. Once you get tens of millions more people into the healthcare system, then you’re going to start to see a lot of pressure to better utilize the resources that are currently in the system. For example, people don’t always have to go to a doctor for something that a mid-level medical professional could provide them.
I predict that more people will begin to purchase high deductible insurance in case of major accidents or catastrophic events – but they’ll want more control over their routine access to the system, including convenient care clinics and complementary and alternative medicine. If we allowed cross-state health insurance purchasing, it would force the system to meet the needs of consumers for more affordable and convenient care.
Dr. Val: You said that increasing access to complementary and alternative medicine is about giving people “more choices.”
Ms. Turner: I’ve heard so many stories about people who were getting their care through their health insurance providers – guided through a predictable pattern of specialist care. And then when they swithched to a health savings account, they could access the system the way they wanted to. So many of our health issues are behavior-related, and it seems that alternative medicine practitioners can have success in helping people modify their behaviors. The more we have top-down regulatory prescription of what the system will pay for or not, the more you eliminate the alternative practices that might be very helpful to people. I’d like to see a lot more pluralism in our healthcare system, and expanding government intervention is not going to help us achieve that goal.
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
September 4th, 2008 by Dr. Val Jones in Uncategorized
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This interview is a continuation from part 1.
Dr. Val: How did Simon contract the MRSA infection?
Dr. Macario: That will remain the biggest mystery of my life. No one knows how he picked it up. In Simon’s case there was no entry via the skin – he had no cut or boil or surface evidence of infection. He contracted the community associated strain of the bacterium, which is much more virulent than the kind people get in hospitals. It seems that the MRSA superbug somehow got into his body via his lungs. It’s possible that he touched something with MRSA on it and put it in his mouth and then breathed it in. Unfortunately, there’s just no way to know where he got it.
Dr. Val: How many children die of MRSA infections/year in the US?
Dr. Macario: According to the Centers for Disease Control and Prevention, in 2005, nearly 19,000 Americans died from MRSA infections. During the same year, there were 134 cases of MRSA in children. Actually, more people in the US die from MRSA every year than from AIDS.
Dr. Val: Tell me what you’re doing to promote awareness of MRSA.
Dr. Macario: I have a Ph.D. in Public Health, and when I received the autopsy report stating that Simon’s death was caused by community-acquired MRSA, I was dumbfounded. I hadn’t even heard of MRSA before. In fact, in my career in Public Health I thought that infectious diseases were no longer much of an emphasis because of the terrific job we’ve done in eradicating most diseases through vaccine programs and antibiotics. I assumed that lifestyle issues (nutrition, physical activity, early detection, and safety precautions) would be the focus of my career.
It was a real eye-opener to me to live through the loss of a child to a menace I thought we had under control. Sixty years ago families had large numbers of children, knowing that some would be lost to infectious disease. That just isn’t the way we think anymore. But MRSA is a threat that could essentially take us back to a time when Americans died of infections quite commonly. MRSA is a superbug that is highly resistant to most antibiotics we have. It’s only a matter of time until it’s resistant to everything.
I’ve begun working half-time with Dr. Robert S. Daum at the MRSA Research Center at the University of Chicago Medical Center, Department of Pediatrics, Section of Infectious Diseases (Chicago, Illinois). Not only are we studying how contagious MRSA is (in home and jail settings), we are also studying the most effective way to treat MRSA infections.
Dr. Val: What should doctors know about MRSA and children?
Dr. Macario: There are 506 new drugs approved by the FDA for development… only 6 are new forms of antibiotics. That’s because the antibiotics are not so profitible. Antibiotic customers are short term users – they need the antibiotic for a short time and then they’re healed. Contrast that with a drug like Lipitor, something that people need to take every day for a lifetime, and you’ll see why statins are more of a priority for drug company development than a new antibiotic that could combat MRSA.
Doctors need to realize that MRSA is a growing threat, and we may not have a good treatment for it in the near future. There is a new strain of MRSA (the “community associated” strain) that can be found anywhere – schools, homes, locker rooms, and gyms. This strain is more virulent and more resistant to antibiotics than anything we’ve seen before.
Dr. Val: What advice do you have for parents to protect their children from MRSA?
Dr. Macario: Wash your hands frequently and thoroughly, clean surfaces with bleach, don’t share personal items like towels and razors. Parents should NOT run to antibiotics for any possible illness their child may have. Don’t use antibiotic soaps. Antibiotics should be considered the absolute last resort. If we keep using them for viral illnesses or when we don’t really need them, we’ll just fuel the drug resistant MRSA.
Dr. Val: What’s the most important thing you’d like to tell Americans about MRSA?
Dr. Macario: This new strain of MRSA (community associated MRSA) can affect anyone. Young, old, middle aged, healthy or sick. It can attack a person as healthy as basketball star Grant Hill. It happened to my healthy baby, and it can happen to your family. People must view antibiotics as a sacred last resort to treating disease. If they overuse and misuse them, MRSA and other resistant strains of bacteria will continue to mutate and become even more prevalent and dangerous.
My husband and I are both highly educated, I keep my house immaculate, I vaccinate my kids, and they never went to daycare centers. It doesn’t matter what socioeconomic strata you’re in, race, gender, ethnicity or age – MRSA doesn’t discriminate. It can happen to you.
But to leave this on a brighter note: my husband and I had another son after Simon died. His name is Dylan, and has brought a lot of joy to our lives.
***
For more information about MRSA, please check out StopMRSAnow.org
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
September 2nd, 2008 by Dr. Val Jones in Uncategorized
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This event looks interesting to me – care to join me on Sept 5? Contact: Larry Wojno. Here’s the press release:
Revolutionizing Health Care
Grace-Marie Turner, CEO Galen Institute — founder of a public policy research organization promoting informed debate over free-market ideas of health reform.
Melinna Giannini, Founder & CEO, ABC Coding Solutions — founder of a coding system and billing platform that helps connect health care professionals with the electronic insurance infrastructure,
Phil Davis, Manager, Committees on Publication for The First Church of Christ, Scientist — advocate for prayer-based health care,
Christine Filipovich, Executive Director, National Association of Clinical Nurse Specialists
will discuss
Revolutionizing Health Care
Health care is one of the top domestic consumer issues facing Americans. Every state legislature is considering some form of health care reform, and it’s a main talking point on the presidential campaign trail. The central question to be discussed is: how can we make quality health care affordable for everyone? Hundreds of thousands of health care professionals are qualified to care for more than 80 percent of patients who are not in critical condition — but these professionals are unable to help on a scale that would mark true reform. Why? Because our system relies on high-cost doctors as gatekeepers, underutilizing lower cost professionals, such as advanced nurses, PAs, pharmacists, midwives and other qualified care givers. Panelists will discuss ways of reforming the system, as well as how a spiritual component is missing from the health care needs of many.
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
August 29th, 2008 by Dr. Val Jones in Uncategorized
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Here’s my weekly list of things that caught my eye in the medical blogosphere:
Vaccines
With all the misinformed parents opting out of vaccinating their kids, could polio make a comeback the way measles has? Dr. Doug Farrago speculates about the new wave of paralyzed children that may be on the horizon.
Bloggers
What kind of person blogs? A new study suggests that bloggers are more likely to be both “open-minded” and “neurotic” by nature.
Drugs of Abuse
Steroid abuse can lead to a severe form of disfiguring acne. KevinMD found this example.
How NOT to forge a prescription for pain medicines. Thank you, Dr. White Coat.
The Healthcare System
Barack Obama says that a government-run single payer healthcare system makes sense for America. Now THAT’s scary.
Thousands wait in line for a free health clinic, staffed by volunteer physicians in Apalachia.
The government clamps down on pharmaceutical gift pens and paper to doctors while welcoming millions in sponsorship from them for political causes. Wow.
Gadgets
How about this new gadget? A clock that you can wear on your thumb nail.
Weird Anatomy
Would you like a vase shaped like your elbow or knee? Why not?
Are men with wider faces more likely to be violent? Dr. Joe presents the latest research.
This artist takes old fashioned anatomical drawings and makes them “joyful.”
Some serious exophthalmos from Happy Hospitalist.
The Cutest Animal Photo EVER
Sorry, I couldn’t resist. Thanks, Medgadget.com
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
