14 posts tagged “stigma”

Primary care that treats mind and body? It’s happening in Alaska

Posted January 25th, 2018 by

Integrated care for both mind and body under one roof? It may sound pie in the sky, but it’s really happening at an award-winning healthcare center in Anchorage, recently featured in Politico. How does it work? And can it be replicated?

A shining example in Anchorage

“It’s a truism that the mind and body are connected, but the U.S. health care system has long treated them as separate — with separate doctors, separate hospitals, separate payment systems,” Politico reports (detailing the history of these health care “silos”).

The Southcentral Foundation, which runs a healthcare center for native Alaskans in Anchorage, is in the spotlight for successfully bridging the mind/body divide.

“In part because of their Alaska Native heritage, which puts a high value on spiritual health, the leaders of Southcentral recognized decades ago that behavioral health is tightly linked with bodily health,” Politico says. “So they became one of the early adopters of integrated care.”

At Southcentral, checkups include a mental health evaluation, and a patient’s primary care team includes on-site psychologists or social workers.

For one patient, Vera, profiled in the Politico piece, “accessing mental health treatment was as easy as going to her regular doctor, and there was no stigma attached: Her mental health services were provided at the same time and in the same place as other medical care, just like heading down the hall for an X-ray or a blood test.” Vera was sexually abused as a child and later diagnosed with major depression. She experienced suicidal thoughts and may not be alive today without the integrated care she received at Southcentral, she says.

Advantages of integrated care

The World Health Organization (WHO) has recommended integrating mental health care into primary care for decades. Here are some of the benefits of integrated mental/physical health care that WHO outlined back in 2001:

  • Less stigmatization of patients and staff, as mental and behavioral disorders are being seen and managed alongside physical health problems
  • Improved screening and treatment, in particular improved detection rates for patients presenting with vague somatic (physical/bodily) complaints which are related to mental and behavioral disorders
  • The potential for improved treatment of the physical problems of those suffering from mental illness, and vice versa
  • Better treatment of mental aspects associated with “physical” problems

A popular notion — and the roadblocks

Research has shown that Americans value physical health and mental health equally. Also, “nearly half of Americans think they have or have ever had a mental health condition (47 percent), yet fewer than two in five have received treatment (38 percent),” according to a 2015 survey by the Anxiety and Depression Association of America.

In a 2017 PatientsLikeMe poll of more than 2,000 members, support for the Affordable Care Act (or “Obamacare”) is highly popular among those living with mental health conditions, perhaps because the policy’s “parity” requirement means that insurers have to cover mental and physical health issues equally.

Politico reports that there’s broad support for physical/mental (behavioral) health integration in both the healthcare sector and in Congress.

The Southcentral Foundation won the Malcolm Baldridge National Quality Award in both 2011 and 2017 for its innovative, top-quality care (psst: 97% patient satisfaction) at a relatively low cost. Douglas Eby, vice president of medical services at Southcentral, says he is often invited to speak at conferences in Washington, D.C., because the Southcentral model is “popular with the whole political spectrum.” (What? Whoa.)

So what are the biggest hangups? Money and stigma.

The U.S. health care and insurance system is structured in such a way that doctors are paid more for (physical) procedures, and they can actually lose money by integrating mental health. The longtime stigma of mental illness extends into the provider space, where mental health clinicians and services are valued much less, dollar-for-dollar, than their “physical care” counterparts.

“Solving these problems will take more than money; it will require changing the culture of medicine,” Politico concludes.

On PatientsLikeMe, thousands of members are living with both physical and mental-health conditions. Join the community today to talk about topics like this with patients like you!

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Speaking out for Lung Cancer Awareness Month: “We’ve got to get rid of the stigma”

Posted November 14th, 2017 by

November is Lung Cancer Awareness Month, and we’re sharing members’ encounters with stigma and the automatic association with smoking. Lung cancer rates are increasing among nonsmokers, and some members of your community are raising their voices. One concern? The assumption that lung cancer only affects smokers could delay diagnosis and treatment for anyone (especially never-smokers) with symptoms. Some say that stigma also affects funding for lung cancer research.

Lung cancer rates rising among nonsmokers

As many as one in five people who die from lung cancer in the U.S. every year do not smoke or use any other form of tobacco, according to the American Cancer Society (ACS). “In fact, if lung cancer in non-smokers had its own separate category, it would rank among the top 10 fatal cancers in the United States,” the ACS says.

Two studies presented at the 2015 World Conference on Lung Cancer showed that lung cancer rates among nonsmokers (especially women) have been increasing over the past decade.

The ACS says that avoiding or quitting tobacco use is still the most important way people can reduce their risk for lung cancer, but researchers have found several other causes or risk factors, including:

  • Radon gas
  • Secondhand smoke
  • Cancer-causing agents at work, such as asbestos and diesel exhaust
  • Air pollution
  • Gene mutations (as PatientsLikeMe Researcher Urvi recently pointed out, some of the latest clinical trials for lung cancer are looking at the role of genetic mutations)

Member Donna on stigma (even in doctors) and raising awareness

Member Donna (LiveWithCancer) was diagnosed with stage 4 lung cancer in 2012 and outlived her poor prognosis. She says she’s trying to raise awareness of lung cancer among nonsmokers and advocate for more research as a way to honor the memory of those who’ve died.

“I was a former smoker but I had quit before I was diagnosed, and it is absolutely heartbreaking to me how many [non-smoking] people were missing the diagnosis because even doctors — many doctors — still have the attitude that smoking is the only cause of lung cancer,” she says. “I’ve lost 20-year-old friends to lung cancer that were never around cigarette smoke at all, even as secondhand smoke.”

Donna says that a person with an unexplained cough and a history of smoking, like herself, is more likely to get a CT scan checking for lung cancer than someone who has not smoked but has possible symptoms.

She has a friend who was in his 40s and was a cyclist who biked “many, many miles every week” and started experiencing unexplained symptoms.

“He never, ever smoked and so it took the doctor a long time to finally look at whether perhaps his lungs had an issue,” she says. “And on his medical records, his wife told me, they wrote ‘patient claims he never smoked.’ They could not even accept that he was telling the truth.”

Her hope in spreading awareness? “We’ve got to get rid of the stigma, first with medical personnel so that they won’t ignore symptoms, but then just among the public because people just … they’re just not nearly as sympathetic with somebody that’s got lung cancer as they are with somebody that’s got breast cancer or any other cancer, really.”

In the lineup of different kinds of cancer, smoking has the strongest link to lung cancer, but researchers say that it can cause at least 14 types of cancer (as well as heart disease). So concrete stereotypes like “smoking=lung cancer” and “lung cancer=smoking” are flawed — and there are many health reasons to quit tobacco use.

Member Jacquie on “putting stigma aside”

Member Jacquie (Jacquie1961), who’s part of the 2016-2017 Team of Advisors, has talked in the forum about how people’s first question when they hear “lung cancer” is “Did you smoke?” or “Do you smoke?”

While those questions used to make her mad, now she takes them in stride and tells people that she used to smoke but quit 17 years ago.

“First and foremost, you have to put that stigma aside and not be embarrassed because I wasn’t,” Jacquie says, noting that other environmental factors play a part in lung cancer risk, such as air pollution’s role in the surge of “non-smoking” lung cancer in China.

“I am pleased to see more attention lately on new breakthroughs for the treatment of lung cancer,” Jacquie mentioned in the forum in 2015. “I think that getting rid of the stigma that it is not just a smokers’ disease is the first step in getting attention.”

On PatientsLikeMe

Join a community of more than 7,000 people living with lung cancer. How are you observing Lung Cancer Awareness Month? What would you like the public to know about the disease and related stigma?

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