Tuesday, October 7, 2008

Underfunded, Disorganized, Population Overflowing,

The following article illustrates just one example of how access to vital treatment in our country is not so easy to obtain. Certainly going to the nearest ER did not work for Nicole.  This article made me feel very sad, but then I am truly thankful that I'm not in her situation.


Why We Couldn't Save Nicole
Finding Treatment for Addiction Was Harder Than We Thought
By Jacqueline M. Duda
Special to The Washington Post
Tuesday, October 7, 2008; HE01

We're a hardy family, used to weathering all manner of surprises as we've seen four kids through various stages of toddlerhood, childhood and adolescence. So when our fun-loving 22-year-old, Nicole, shocked us by admitting a heroin addiction and asked for our help in overcoming it, my husband and I froze only an instant. Then we leapt into action, firmly believing that with the aid of 21st-century medical treatment, we could help her reclaim her life.

Surely, we thought, college-educated suburbanites like us could locate professional help: drug counselors, doctors, therapists specializing in addiction. Surely detoxification centers would treat desperate addicts and work out a payment plan. Surely we could check her into some kind of residential treatment program with a minimum of delay.

We were wrong.

The next several months of trying to get her affordable treatment were like entering some unknown circle of hell. Then the world as we knew it came crashing down when two policemen showed up -- two years ago yesterday -- to tell us that Nicole had been found dead of an accidental overdose.

We're still adjusting to life in a reconfigured family that bumps along like a wagon missing a wheel. Meanwhile, we continue to probe the gaps in the addiction treatment system to share what we learn in hopes of helping others avoid tragedy.

The Nightmare Begins
The phone rang at 4 a.m. on the day before Thanksgiving 2005. Nicole, living in Savage, always came home for holidays, but that's not why she was calling that night. She was experiencing raging withdrawal symptoms -- vomiting and muscle tremors -- and fear and physical pain forced her to reveal her addiction.

Our first response was to leave our suburban enclave outside Frederick and take Nicole to the nearest emergency room, assuming staff there would admit her directly into some kind of treatment. How naive. Instead, an ER doctor gave her a clonidine patch and said it would take the edge off her cravings. Then he released her.

He handed us a single sheet of paper listing dozens of drug treatment facilities in Baltimore. A sentence at the top advised us to call the clinics every day, be polite and not burn any bridges. That puzzled me, at first. Weeks later, with no progress toward finding help for Nicole, I understood the admonition better.

During this initial foray into the drug-treatment world, we trolled the Internet night and day. We Googled "heroin addiction" and thumbed through phone books. It wasn't that there was no information; the information overwhelmed us, without providing answers. We called one place after another. But when private clinics learned that Nicole had no insurance and had been determined ineligible for Medicaid, most simply said "sorry" and hung up; and at $15,000 to $25,000 for a 28-day residential stay, they were out of middle-class reach.

The public, government-funded centers were stuffed to the gills, often with patients from prison-related programs. As one counselor told us, an addict can get in faster if he commits a crime than if he just asks for help. "There is a false sense in the public that treatment is one phone call away," says Mike Gimbel, former director of substance abuse education and prevention at Baltimore's Sheppard Pratt Health System, now president of his own consulting firm. "It's a crisis, because people believe they can get help, and it's not there."

We learned about a whole range of treatment measures: detoxification; individual, group and family therapy; residential treatment; 12-step programs. And of course, medication. Like many (perhaps most) families of addicts, we were completely bewildered. I realize now that drug addiction and the problems in treatment have been old news for decades. But when it happened to us, it was news to us. We had little way of evaluating what we learned or figuring out what we didn't know.

Treatment options exist if families know how to navigate the system, says Mady Chalk, director of the Center for Policy Analysis and Research at the Treatment Research Institute in Philadelphia. "Families need to know the right questions to ask," she says, "and someone needs to help them figure it out." We talked to agencies, crisis hotlines and counseling centers, but we often got conflicting information, confusing us even more.

Relapsing
As days and then weeks passed, Nicole seesawed between wanting to resume a normal life and craving heroin. Having moved back with us temporarily, she talked about living drug-free, getting another job and returning to college in Frederick County. She smiled; She said she missed my cooking. Her friend Meagan came over, and we ate ice cream and joked about the old days in middle school. In those moments I recognized the laughing, affectionate daughter I'd taken to dance classes for 15 years.

But other days the grim hand of addiction reached out and grabbed Nicole, and she would hitch a ride with someone and head for Baltimore. She would tell us she had a court date (she'd been charged with speeding, drug possession, driving with a suspended license), or she was just going to the movies. When we called to check on her, we couldn't always locate her. Our hunts for her frequently lasted all night.

This is a normal pattern for most addicts; those who have successfully gotten clean say it took them several attempts over months or years. "They've been using and they keep using, because it gives them something, and they don't want to give that up," says Yngvild Olsen, a Harford County internist certified in addiction medicine and the medical director and acting deputy health officer for the county Health Department. "Yet they hate the life."

Three weeks after that pre-Thanksgiving confession, we got Nicole a spot at the local health department's drug treatment program. She began attending sessions two to three times a week, paying a fee ($20 a session) based on her meager income from a job at a restaurant. Most of the treatment was group therapy; there were also family sessions, which included us. We could see that the clinic was swollen with desperate clients, and the overworked staff members were clearly doing the best they could.

But Nicole's seesawing continued. She would disappear and call from an unknown location, saying she was fine. We wanted to believe her, despite the wobble in her voice, but we couldn't. When we asked the police to help find her, they said that because she was older than 18 she wasn't considered a runaway, but they would keep watch for her if she had a warrant from a missed court date. Many were sympathetic, but we mainly hunted on our own.

All this was made more difficult by the shame and fear surrounding addiction. I couldn't help but wonder if everyone I told would look at me as though I were an addict myself, or simply devoid of any moral character, and not as a frightened mother. Experts describe addiction as a chronic, relapsing disease, "like someone with diabetes that ends up with out-of-control blood sugar that may have been self-inflicted from not following his diet," in the words of Wilson Compton, director of the division of Epidemiology, Services and Prevention Research at the National Institute on Drug Abuse.

But when your kid falls off the wagon, don't expect the same attitude the diabetic gets. People tend to see addiction as an immoral choice, a character flaw. And even though treatment has been shown to reduce drug use by 40 to 60 percent, many people view it as a revolving door for addicts who thumb their noses at sober living. The media spotlight on celebrities who drop in and out of rehab doesn't help.

Since the public hasn't bought the disease model, Gimbel says, politicians aren't willing to invest more public dollars in treatment. "Politically speaking, it's more expedient to combat the drug problem by hiring more police and building more prisons," he says. "The public thinks we can arrest our way out of this problem."

Hoping for Detox
Over the next few months, Nicole continued the cycle of trying to quit and relapsing. When the pains of withdrawal became severe, she visited our local hospital emergency room. Each time, we hoped that she'd be whisked into detox, a three-day hospital stay during which doctors can prescribe medications, such as methadone, to ease withdrawal symptoms and replacement therapy for the addictive substance.

The problem is, most hospitals and local treatment programs don't offer detox. And few hospital ERs have addiction experts. "Detox is viewed separately from the treatment system," Chalk explains, and Nicole never got that kind of medical help.

Even if she had, we now know that we would have faced another race after the three-day program to find follow-up clinical treatment without interrupting her care. Timing is crucial: Every once in a while, such as after a successful detox, addicts reach a point where they actually want help, Gimbel says: "It's a little window, hours, maybe days if you're lucky." But Chalk says that only about 25 percent of addicts who undergo detox make it into treatment within 30 days.

Nicole wanted to stay close to home, so I didn't look hard in Baltimore. Months after she died, I found that a few hospitals there offer detox, though they're overburdened and she might not have been able to get in. Still, I agonize every day over my belated discovery and wonder why the emergency room didn't have a resource book or some automatic way of telling people like us where the detox units were.

In May 2006, after months on a waiting list for a bed, Nicole got into the Joseph S. Massie Unit of the Allegany County Health Department in Cumberland, Md. She stayed 30 days. My husband and I visited every Sunday and Wednesday while friends watched our younger children. I split myself into two people: one, the mom baking cookies for the elementary school reading party; the other, a worried parent driving more than 100 miles each way to visit her eldest at a treatment clinic.

It was the only time during these months that we relaxed a little bit and felt she was safe. By the third week of treatment, I said to my husband, "I'm starting to see the sparkle back in her eyes."

Nicole was released from Massie on a Friday. The following Monday, she called us from the road: Instead of staying at the halfway house where she was assigned after Massie, she had gone to live in Ocean City. She said, "You know I love the ocean, Mom." She said she had a job. Our hearts sank.

Losing the Fight
Over time, Nicole told us that she had been doing heroin for about two years, starting at Baltimore dance clubs and parties. It was part of the fun, she said; she didn't think she'd get hooked. Again, she was not unusual. Rather than getting caught up in the whys, Gimbel says, he wants people to understand that the most pressing need is to find treatment. "Saying 'All they need is some willpower,' like we used to with tobacco, doesn't work," he says. The drugs tell them what to do 24 hours a day, and conniving, manipulative behavior replaces their old personality. When the drug urges were great, Nicole could always figure out a way to get them.

And that is what happened.

On Oct. 6, 2006, I was at my youngest child's elementary school helping the teacher. The holiday season was approaching again, and we expected Nicole to come home as usual. After school, the younger girls and I picked up their brother, Joe, from cross-country practice. Then we got the "visit." Two Frederick County police officers showed up as I was preparing dinner. I left it burning on the stove after they told us the words no parent ever wants to hear.

Nicole had been dead two days when she was found, after an all-day party at the beach. She had alcohol, cocaine and methadone in her system; the combination of depressants proved lethal. She'd been out of Massie less than four months.

Families who know our experience come out of hiding to seek advice. I see the same exhaustion and worry on their faces. I wince when I overhear a crime drama on television refer to addicts as "crack hos" or "junkies." I'm a parent advocate member of the National Council on Alcoholism and Drug Dependence, Maryland Chapter. Each time I speak at a drug treatment conference or interact with an addict in recovery, I can't help but see Nicole and think: We can do better.

Jacqueline M. Duda is a Washington area freelance writer. Comments: health@washpost.com.

Sunday, October 5, 2008

Psychiatric Help 5 cents - The Doctor is In

Since shock, anger, denial are common reactions to a diagnosis of multiple sclerosis, and depression can be caused by the disease process itself, it's important to seek professional help when necessary.

But how does your insurance policy cover your mental health benefits? Does your insurance require higher copays for mental health visits as compared to physical health? Does it limit the number of visits which are covered during the year? Do you have to pay a percentage of the charge rather than a set copay?

The following is information about the Mental Health Parity Act of 2008 (originally shared on Health Central).

Congress has been trying to address the inequality of mental health benefits for over a decade and it is now included in the “Wall Street Bailout Bill” of all places. As you probably know, the Bailout Bill includes a few housecleaning extras. One of those extras (see page 310) is the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.

This Act would improve the mental health insurance coverage for policy holders in group plans, but would not affect policy holders of individual plans or medicare. Also included in the legislation is a small business exemption for companies with fewer than 50 employees, as well as a cost exemption for all businesses.

The new Mental Health Parity Act does not mandate that group plans provide mental health coverage. It does, however, require that group insurance policies which do offer mental health coverage cannot impose separate financial requirements or treatment limitations as compared to medical surgical coverage. Basically, mental health must be treated in the same manner as physical health. The legislation developed in talks with mental health, insurance and business organizations to craft compromise legislation.

The 1996 parity law, authored by Pete Domenici and Paul Wellstone, provided parity for annual and lifetime limits between mental health coverage and medical surgical coverage. The new legislation expands parity by including deductibles, co-payments, out-of-pocket expenses, coinsurance, covered hospital days, and covered out-patient visits. It also requires that if in-network and out-of-network benefits are offered for medical surgical coverage, they must also be offered for mental health coverage.

So what does this have to do with multiple sclerosis?

Well, when you seek psychiatric expertise and/or talk therapy counseling services to address depression and the emotional aspects of MS, you will be covered the same as for other types of doctors’ visits.

Unfortunately this Act only applies to folks who have group coverage, are employed by a business with more than 50 employees. But it’s a great start!!

(More links are included in the commentary on the original post.)

Thursday, October 2, 2008

Don't Vote!!



Time is running out to register to vote. Check here for the deadline in your state.

Wednesday, October 1, 2008

Talking to the Big Guys

In less than three weeks, I will be traveling to speak at a conference specifically for Johnson & Johnson worldwide communication employees.

The keynote session in which I am participating will discuss the fundamental shift of communications caused by social media (like our blogs) from the strict broadcast mode to one of conversations between people and companies. I'm told that companies like J & J did this regularly 100 years old, so perhaps the cycle is coming full circle.

I will tell my story about how I got involved in blogging and what has developed with Brass and Ivory and the Carnival of MS Bloggers. Of interest is how blogging connects us with each other and empowers us with knowledge, resources, and support. I know that I've benefited directly from the personal support freely given and wise words of advice.

Also speaking is Alice Krueger, via video (she is homebound) about how Second Life enables the folks in the community she started to form a community without limits, and about how that benefits them.

There are planned to be some questions and answers with the audience. Some of the questions that would be asked include:

1. What role do you see companies having in this space?

2. Are companies doing enough in this space?

3. What don't you want from organizations?

If you were on this same panel, what would be your story?
How would you answer these same questions (or others you think should be asked)?
What would you want from the companies who serve MS patients?

P.S. I think it's pretty cool that companies are taking notice of what regular folks are doing for themselves and for each other. Social media forums are not going away anytime soon, and I for one would like to be spoken with rather than talked to. What do you think?

Tuesday, September 30, 2008

Paging Dr. Google, or, Consulting with the Homies

The New York Times ran an article (September 30, 2008) discussing the trend on going online for health information.  If you are a regular reader of this blog, and especially if you're one of my MS Blogger "homies," then you are one of those folks being discussed.

Mentioned within the article is DiabetesMine.com which is run by Amy Tenderich (man, that girl gets a lot of press coverage) in a blog setting.  Amy's got a thriving community at her site which is kinda cool.  We've got a thriving community which is spread over many, many sites.

So read and enjoy. 
When Terri Nelson learned she had a large fibroid tumor in her uterus, she went online.

There is nothing new in that, of course. The intrepid and the adept were going to the Web for health information as long ago as the 1980s, well before Google and other search engines made it accessible to a wider audience.

These days, that is pretty much everyone. At least three-quarters of all Internet users look for health information online, according to the Pew Internet and American Life Project; of those with a high-speed connection, 1 in 9 do health research on a typical day. And 75 percent of online patients with a chronic problem told the researchers that “their last health search affected a decision about how to treat an illness or condition,” according to a Pew Report released last month, “The Engaged E-Patient Population.”

Reliance on the Internet is so prevalent, said the report’s author, Susannah Fox, the associate director at Pew, that “Google is the de facto second opinion” for patients seeking further information after a diagnosis.

But paging Dr. Google can lead patients to miss a rich lode of online resources that may not yield to a simple search. Sometimes just adding a word makes all the difference. Searching for the name of a certain cancer will bring up the Wikipedia entry and several information sites from major hospitals, drug companies and other providers. Add the word “community” to that search, Ms. Fox said, and “it’s like falling into an alternate universe,” filled with sites that connect patients.

As a result, said Dr. Ted Eytan, medical director for delivery systems operations improvement at the Permanente Federation, “patients aren’t learning from Web sites — they’re learning from each other.” The shift is nothing less than “the democratization of health care,” he went on, adding, “Now you can become a national expert in your bedroom.”

These expanded capabilities allow people to share information easily, upending the top-down path of information between doctors and patients. Today, said Clay Shirky, an expert in the evolving online world, patients are “full-fledged actors in the system.”

And they have plenty of company. Benjamin Heywood, the president of PatientsLikeMe.com, a site that allows patients to track and document their conditions and compare notes with other patients, says that with a growing online population, it becomes possible to research highly specific conditions — say, being a 50-year-old with multiple sclerosis who has leg spasms and is taking a certain combination of drugs.

“We are really about measuring value in the real world,” he said.

There are so many sites today and the landscape is changing so rapidly that it would take an encyclopedia rather than a newspaper to list them. But they can be grouped into five broad, often overlapping, categories:

GENERAL INTEREST Sites like WebMD (webmd.com), Discovery Health (health.discovery.com) and The New York Times (nytimes.com/health) provide information about disease, news and lifestyle advice, as do medical institutions like the Mayo Clinic (mayoclinic.com).

MEDICAL RESEARCH SITES offer access to the published work of scientists, studies and a window into continuing research. Examples include PubMed (ncbi.nlm.nih.gov/pubmed) from the National Library of Medicine; clinicaltrials.gov, which tracks federally financed studies; psycinfo (apa.org/psycinfo), with its trove of psychological literature; and the National Center for Complementary and Alternative Medicine (nccam.nih.gov), the government’s registry on alternative medicine research.

PATIENT SITES for groups and individuals are booming — so much so that they are increasingly used by researchers to find patients for studies. These include the Association of Cancer Online Resources (acor.org) and e-patients (e-patients.net), as well as Patients Like Me and Trusera (trusera.com), which provide a bit of Facebook-style social connectivity for patients, along with the ability to share their stories in clinical, data-laden detail.

DISEASE-SPECIFIC SITES focus on a particular condition and are often sponsored by major organizations like the American Heart Association (americanheart.org), the American Cancer Society (cancer.org) and the American Diabetes Association (diabetes.org). But smaller groups can put together extensive resources as well, with sites like breastcancer.org and Diabetes Mine (diabetesmine.com), which calls itself the “all things diabetes blog.”

WEB TOOLS These sites help people manage their conditions — for example, sugarstats.com for diabetes, Destination Rx (drx.com) for comparing drug prices, and YourDiseaseRisk.com, a service of the Washington University school of medicine that helps patients determine their risk for various problems.

All of the changes in the Internet and the ways people use it help explain why Terri Nelson’s experience in 2008 is very different from what it might have been in 1998.

Ms. Nelson, who lives in Portland, Ore., received her diagnosis on Aug. 11. She had two weeks before a follow-up visit with her surgeon. Ms. Nelson and her husband, Stewart Loving-Gibbard, used the time to research fibroids and the most common treatments.

Ms. Nelson started with straightforward information gathering, checking the articles on fibroid tumors at sites that included the Mayo Clinic and PubMed. Then she reached out to the community of people with fibroid tumors at ACOR and other sites. (“Those had to be evaluated carefully,” she said, “to find the nuggets of valid information in the vast sea of online hypochondria.”)

Having spent many years trolling boisterous online forums, however, she had developed that essential Internet tool: what might be called a personal baby/bathwater algorithm that helps people to sift through mountains of information to find what is relevant. She found a blog for the layperson, “Inquisitive Geek With Fibroid Tumors,” that featured wide-ranging discussions and, she said, “was really useful” and specific to her condition.

By the time she went into the consultation with her surgeon, she knew that the old-school way of dealing with her grapefruit-size tumor would probably have been a hysterectomy. But that can impair sexual response, among other side effects; a growing number of doctors prefer abdominal myomectomy, which leaves the uterus intact. The surgeon laid out the options and recommended that approach as well, confirming Ms. Nelson’s research.

During the surgery and recovery, Mr. Loving-Gibbard used Twitter, the short-message communication service, to keep friends and family apprised of her condition. Twittering an operation might seem frivolous, but when Ms. Nelson’s teeth began chattering after the procedure, a friend following the updates suggested it could be a potentially hazardous side effect, tardive dyskinesia, that can occur with one of the antinausea drugs Ms. Nelson was taking. Mr. Loving-Gibbard, who had been researching that very point when the message from the friend, Ken Yee, came in, was able to get the medication changed.

After the procedure, they posted photographs of the surgery and tumor on the photo-sharing site Flickr.com under the heading “Extracting a Pound of Flesh” (flickr.com/photos/littlecrumb/sets/72157607218121711/). They are not for the squeamish, but as Ms. Nelson said, “My husband’s family is mostly doctors, so they were all interested in seeing the photos, and most of my friends are morbidly fascinated.”

As patients go online to share information and discuss their care, they are becoming something more: consumers. Amy Tenderich, the creator of Diabetes Mine has turned her site into a community for diabetes patients and an information clearinghouse for treatments and gadgets — even going so far as to publish an open letter last year to Steven Jobs, the Apple Computer co-founder, challenging him to design medical devices like insulin pumps that are as sleek and easy to use as an iPod.

Dr. Talmadge E. King Jr., chairman of the department of medicine at the University of California, San Francisco, says doctors are coming around to seeing the value of a patient who has gone online for information.

Patients in his pulmonary practice, he said, sometimes come into his office holding medical journal articles he has written “and quiz me.” The better-educated patient might stump the doctor, he went on, but these days “it’s much easier for me to look them straight in the eye and say, ‘I don’t know’ ” and promise to get back to them. “Patients know you’re not all-knowing,” he said. “They’re not upset by that.”

Can online information be trusted? The answer, increasingly, is yes. In a study earlier this year, a report in the journal Cancer looked at 343 Web pages about breast cancer that came up in online searches. The researchers found 41 inaccurate statements on 18 sites — an error rate of 5.2 percent. Sites promoting alternative medicine were 15 times as likely to offer false or misleading health information as those sites that promoted conventional medicine, the study found.

Matthew Holt, who with Indu Subaiya created a conference, Health 2.0, that showcases innovation, says the marketplace in information can correct itself over time.

“In the end,” he said, “the more people you have in the conversation, the better information drives out the worse information.”


Copyright 2008 The New York Times Company