Girl has blunt message for Aetna after her brain surgery request was denied

Bureaucracy slowly grinding away the lives of the people it supposedly sees as its customers....
https://goo.gl/9dXiHU

Cara had multiple complex partial seizures that weekend. When the seizures strike, her body gets cold and shakes, and she zones out for anywhere from 20 seconds to two minutes, typically still aware of her surroundings. Her seizures can be triggered by stress, by being happy, by exerting herself -- almost anything. "It's like having a nightmare but while you're awake," she said.
In the six weeks since the denial, Cara has had more than two dozen seizures affecting her everyday life. Her message to Aetna is blunt: "Considering they're denying me getting surgery and stopping this thing that's wrong with my brain, I would probably just say, 'Screw you.' ''

The Pressman family and, separately, Jennifer Rittereiser, a 44-year-old mom who has struggled with seizures since she was 10, approached CNN in recent weeks after they were both denied, by Aetna, for laser ablation surgery, a minimally invasive procedure in which a thin laser is used to heat and destroy lesions in the brain where the seizures are originating. Aetna is the third-largest health insurance provider in the country, providing medical coverage to 23.1 million people.
Neurologists consider laser ablation, which is performed through a small hole in the skull, to be safer and more precise than traditional brain surgery, where the top portion of the skull is removed in order for doctors to operate. The procedure is less daunting for the patient and parents who make decisions for their children: No one likes the idea of a skull opened and a chunk of brain removed.
In denying Cara her surgery, Aetna said it considers laser ablation surgery "experimental and investigational for the treatment of epilepsy because the effectiveness of this approach has not been established."

The insurance company did approve her for the more invasive and more expensive open brain surgery, called a temporal lobectomy, even though her medical team never sought approval for the procedure.
The laser surgery is approved by the Food and Drug Administration and is widely recognized within the epilepsy community as an effective treatment alternative to open brain surgery, especially when the location of seizure activity can be pinpointed to a specific part of the brain.
Dr. Jamie Van Gompel, a neurosurgeon at the Mayo Clinic, disputes Aetna's assessment. He is not involved in Cara's care nor Rittereiser's treatment, but he said Aetna's assessment is wrong.
"I would not call it experimental at all," said Van Gompel, who is leading a clinical trial on the surgery at Mayo as part of a larger national study. "It's definitely not an experimental procedure. There've been thousands of patients treated with it. It's FDA-approved. There's a lot of data out there to suggest it's effective for epilepsy."
Van Gompel said a temporal lobectomy carries a much higher risk of serious complications, including the possibility of death. "It's a big jump to go to a big invasive procedure," he said.
Recovery time after open brain surgery can range from six to 12 weeks. By contrast, a patient who undergoes laser ablation can be back to work or at school in less than two weeks. The pain from laser surgery is much less, and extreme headaches are fewer than with open brain surgery, Van Gompel said.
While laser ablation has not yet undergone large randomized controlled trials, Van Gompel said existing data shows it's effective more than 50% of the time. He hopes the current clinical trial will show a success rate of 60% to 70% or better in epilepsy patients. Temporal lobectomies, he said, have a slightly better rate, of more than 70%.


The town that’s found a potent cure for illness – community

https://goo.gl/26pqVB

This week the results from a trial in the Somerset town of Frome are published informally, in the magazine Resurgence & Ecologist. (A scientific paper has been submitted to a medical journal and is awaiting peer review). We should be cautious about embracing data before it is published in the academic press, and must always avoid treating correlation as causation. But this shouldn’t stop us feeling a shiver of excitement about the implications, if the figures turn out to be robust and the experiment can be replicated.

What this provisional data appears to show is that when isolated people who have health problems are supported by community groups and volunteers, the number of emergency admissions to hospital falls spectacularly. While across the whole of Somerset emergency hospital admissions rose by 29% during the three years of the study, in Frome they fell by 17%. Julian Abel, a consultant physician in palliative care and lead author of the draft paper, remarks: “No other interventions on record have reduced emergency admissions across a population.”

Frome is a remarkable place, run by an independent town council famous for its democratic innovation. There’s a buzz of sociability, a sense of common purpose and a creative, exciting atmosphere that make it feel quite different from many English market towns, and for that matter, quite different from the buttoned-down, dreary place I found when I first visited, 30 years ago.

The Compassionate Frome project was launched in 2013 by Helen Kingston, a GP there. She kept encountering patients who seemed defeated by the medicalisation of their lives: treated as if they were a cluster of symptoms rather than a human being who happened to have health problems. Staff at her practice were stressed and dejected by what she calls “silo working”.

So, with the help of the NHS group Health Connections Mendip and the town council, her practice set up a directory of agencies and community groups. This let them see where the gaps were, which they then filled with new groups for people with particular conditions. They employed “health connectors” to help people plan their care, and most interestingly trained voluntary “community connectors” to help their patients find the support they needed.

Sometimes this meant handling debt or housing problems, sometimes joining choirs or lunch clubs or exercise groups or writing workshops or men’s sheds(where men make and mend things together). The point was to break a familiar cycle of misery: illness reduces people’s ability to socialise, which leads in turn to isolation and loneliness, which then exacerbates illness.


The Opioid Crisis the News Isn’t Talking About

https://goo.gl/WJKynH

We are members of Not Dead Yet, a national grassroots disability rights organization, and some of us are living with chronic pain ourselves. Based on our knowledge of the disability community through personal experience and through our work, we have not seen disabled people with chronic pain experiencing opioid use disorder. What we are seeing is many disabled people who are suffering due to the lack of access to opioid medication[2] previously available as part of comprehensive strategies and approaches to address chronic pain. They are experiencing an increase in chronic pain and other symptoms associated with that pain. Disabled people and others with chronic pain are rarely the ones who are abusing opioids,[3] but they are the ones who are having to deal with chronic pain symptoms without access to medications that made this pain more tolerable.

That is not to say that some disabled people will not have opioid use disorder. However, from our observation, chronic pain is not a causal factor[4] in who has abused opioids. Instead, opioids are a mitigating factor in how independent those with chronic pain are able to be. Having to deal with chronic pain with no relief, when opioid medication prevented such pain, can greatly affect the quality of life[5] disabled people with chronic pain have. It can affect their ability to perform activities of daily living. It can affect their ability to sleep. It can affect their mood. It can affect their productivity. Those with chronic pain that is untreated or mistreated are more likely to be depressed,[6] and depression itself can also be linked[7] to physical pain. Being depressed and in pain can also make disabled people more susceptible to suicidal ideation,[8] especially when there is seemingly no relief to the long-term pain they experience.

For some disabled people, opioids are the only medication or treatment that can help their pain. Now, those who have chronic pain are treated with suspicion,[9] as though they are abusing opioids, especially by medical personnel at doctors’ offices and hospitals when they seek out this medication. Doctors are increasingly afraid and unwilling[10] to prescribe opioids, so instead of continuing effective treatment for those who have seen great benefits from using these medications, too often doctors are essentially abandoning those who truly need access to opioids.

Opioid abuse is a problem, but it is not a problem for the overwhelming majority[11] of the disability community or others with chronic pain. It’s a problem for those who have already been abusing these medications. Those are typically not people who need these medications to handle long-term chronic pain.

Yet, as sometimes misguided approaches to addressing the opioid crisis are hastily undertaken across the country, the very individuals, who benefit greatly in terms of health and productivity from continued opioid use as part of a comprehensive pain management strategy, are the people who face the most scrutiny and harm by not having access to medically necessary and appropriate medication.

HHS/ACL must recognize the harmful effects of a misguided crackdown on the legitimate use of opioids for chronic pain, educate state governments and providers about research on this issue, and discourage federal, state and local programs that do more harm than good in addressing the opioid crisis.


Your Pets and Animals in an Emergency

https://goo.gl/7fpEII

Get Informed

  • Know what disasters could affect your area, which could call for an evacuation and when to shelter in place.
  • Keep a NOAA Weather Radio tuned to your local emergency station and monitor TV, radio, and follow mobile alert and mobile warnings about severe weather in your area.
  • Download the FEMA app, receive weather alerts from the National Weather Service for up to five different locations anywhere in the United States.

Make a Plan

Remember, during a disaster what’s good for you is good for your pet, so get them ready today.

If you leave your pets behind, they may be lost, injured – or worse. Never leave a pet chained outdoors. Plan options include:

  • Create a buddy system in case you’re not home. Ask a trusted neighbor to check on your animals.
  • Identify shelters. For public health reasons, many emergency shelters cannot accept pets.
    • Find pet friendly hotels along your evacuation route and keep a list in your pet’s emergency kit.
    • Locate boarding facilities or animal hospitals near your evacuation shelter.
    • Consider an out-of-town friend or relative
  • Locate a veterinarian or animal hospital in the area where you may be seeking temporary shelter, in case your pet needs medical care. Add the contact information to your emergency kit.
  • Have your pet microchipped and make sure that you not only keep your address and phone number up-to-date, but that you also include contact info for an emergency contact outside of your immediate area.
  • Call your local emergency management office, animal shelter or animal control office to get advice and information.
  • If you are unable to return to your home right away, you may need to board your pet. Find out where pet boarding facilities are located.
  • Most boarding kennels, veterinarians and animal shelters will need your pet's medical records to make sure all vaccinations are current.
  • If you have no alternative but to leave your pet at home, there are some precautions you must take, but remember that leaving your pet at home alone can place your animal in great danger!


160 organizations ask HHS Secretary Alex Azar to withdraw Medicaid work requirement

https://goo.gl/gc7Js3

Over 160 organizations, including many advocates for mental health and opioid use disorder, have written to Health and Human Services Secretary Alex Azar to protest the new federal policy imposing work requirements on Medicaid beneficiaries.

The groups want Azar to withdraw the guidance on the work requirement that was issued by the Centers for Medicare and Medicaid Services on January 11. They also want the government to discontinue state waiver approvals that include work requirements.

The policy would hinder healthcare access provided by Medicaid to individuals with chronic health conditions, especially those struggling with substance use disorders and mental health disorders, they told Azar.

"This is deeply troubling given the devastating and escalating opioid overdose crisis that President Trump has designated as a national public health emergency," the letter said.

CMS's policy is at odds with bipartisan efforts to curb the opioid crisis and to improve reentry from prisons and jails, it said.

These beneficiaries would be subject to the work requirement because they don't satisfy the Social Security disability requirement for an exemption.

The January CMS guidance requires able-bodied adults to work or be involved in community service to receive Medicaid benefits. On the same day, CMS approved a Medicaid demonstration waiver for work requirements in Kentucky.

Within two weeks, three organizations representing 15 Medicaid beneficiaries in Kentucky filed a lawsuit to stop the waiver from moving forward. Future lawsuits are expected from other states that are also requesting waivers.