ashbet

Since DW is taking a while to catch up on my archived entries:

I was in the ER on Monday morning, with what turned out to be a kidney infection. Also picked up a respiratory infection while I was there.

On Tuesday, I took these photos/wrote this post for Facebook, because I felt like it was important -- forgive my semi-feverish rambling, but so many people with invisible illnesses really struggle to be *seen*, so I thought this might help a little bit.

* * *

"But you don't look sick!" is one of the most frustrating phrases to hear, if you're a person who lives with with invisible illness or chronic pain.

Posting these as a direct example -- when you deal with pain and other symptoms every day, many people learn how to cover it up really, really well. But the act of doing so doesn't mean that they aren't genuinely ill.

I'm fighting a combination of kidney infection and respiratory infection in these photos, in addition to Ehlers-Danlos and its myriad bullshit comorbid conditions. I have a fever, and I'm getting hit by the leading edge of a migraine coming on. I feel like death warmed over.

But I *had* to leave the house to take Kira to her eye appointment (they were dilating her eyes, so she couldn't drive), and I chose to look cute and put on makeup because I had a Skype date with Cav planned for this morning, which I was very happy and excited about -- the smile is perfectly genuine!

(FWIW, yesterday, I looked *fucking awful* -- the IV antibiotics and pain meds helped immensely.)

So -- when someone tells you that they're in pain or dealing with an invisible illness... don't judge by appearances, and realize that someone who made an effort today may have only been able to put on pants and leave the house one day this week, so you're seeing them at their best.

(You guys are amazing, and I'm not pointing this at anyone -- but I've dealt with disbelief and dismissal even within my family of origin, and with doctors who couldn't be bothered to deal with a complex patient or a rare disease... and that's an incredibly common experience for people with invisible illnesses -- it happens to almost all of us.)

Thanks for listening -- this is a difficult and painful issue for so many people, and I thought a demonstration might be useful.

On a lighter note, check out Nurse Zuul keeping me company on the pillow in bed <3

How to call your reps when you have social anxiety (but the info is good for everyone, and there are scripts and contact pages and good links in here, so this is relevant even for people who have no issues with using the phone.)

* * * Here's what I wrote when I posted this elsewhere:

FWIW, I'm one of the people who will lose healthcare access if Trump repeals the ACA, as is my daughter.

Please speak up about the need for a national healthcare program, rather than a state-by-state patchwork of states that refused or accepted the ACA Medicaid expansion.

We're in a really bad situation here -- we can't afford to just move, we have secure housing in Texas, and there's no guarantee that another state would be better, if the ACA is repealed.

There are a lot of other issues that everyone should be contacting their representatives about (especially discrimination against LGBT people, people of color, and immigrants), and I hope you are doing so . . . but please give a moment of thought and a few words to the plight of disabled and/or chronically-ill people, as well.

Thanks so much <3


[Public, shareable]

My amazing friend Kali is working on an idea that might be able to provide direct help to vulnerable people most affected by the new administration:

https://www.facebook.com/kali.blaze.98/posts/1162723357150766?pnref=story

"I have mentioned in a couple places that I am thinking about trying to put together something inspired by the Underground Railroad to help our LGBT community and (if the ACA falls) disabled folks relocate to more hospitable states. Whenever things get ugly, a lot of privileged liberals ask, "Why don't they just move?" They don't understand that for the most vulnerable folks, 'just move' somewhere safer feels about as likely to happen as 'just move' to the moon.

My plan has 3 key parts. First, we need a network of waystations, people who will give the people we're helping somewhere to stay for the night. Second, we need places for the people we're helping to stay in liberal areas while they get hooked up with social services (if appropriate) and find places to live. Third, it's going to take money and resources to run this all - gas cards, frequent flyer miles, any rental or moving companies that would work with us, relationships with motel chains or restaurant chains or gas chains that might give us discounts, money to help with deposits on new places to live, anything and everything we can use to help make moves easier.

If I'm going to do this, I guess I'll have to put together a nonprofit for this purpose. I'm tentatively calling this entity Come Home Safe. Obviously, I can't do this alone. Even if I was healthy, there's so much to do! So I figured I would ask if any of my friends would be interested in joining me to put this together."

***

There's more, if you click through. I'm absolutely willing to serve as a Texas waystation, although my own finances are such that I could provide a bed and food, but not financial donations at this time. Still, if people who can't provide housing are willing to kick in to help fund the movement, I think this is something that could really help people in need directly.

Please comment on Kali's post, so that she can get notified of the responses.

(BTW, she does have a legal background, and has worked for legal nonprofits in the past, so she's not just a layperson offering to set something like this up -- she does have relevant contacts and experience in the field.)

It's not a one-person job -- she has the same genetic disorder that I do, so spoons are limited -- but she's someone I'd trust to bring this movement to life :)

[Public, shareable]

http://www.medscape.com/viewarticle/868127

Medscape Medical News
US Health System Failing America's Sickest Adults

Megan Brooks
August 30, 2016

Twelve million US adults have three or more chronic illnesses plus a functional limitation that makes it tough to perform basic activities of daily living, and the US health system is not meeting their needs, according to new research from the Commonwealth Fund.

"The sickest patients have the highest medical spending but cannot reliably get the healthcare they need, even though they have insurance," Commonwealth Fund President David Blumenthal, MD, said in a news release.

"This is a sign that our healthcare system is failing its most vulnerable patients. Helping patients with the greatest needs should be among the very highest priorities for efforts to improve our current system," he said.

"We have known for a long time that there are very sick patients facing challenges in daily living and that our healthcare system has to do a better job of caring for them," added coauthor Melinda Abrams, Commonwealth Fund vice president for delivery system reform.

"This research shows us who they are, what their needs are, and how the system is, or isn't, working for them right now. This gives us a clearer picture of how to help them get and afford the care they need, so they're able to live their lives to the fullest extent possible," Abrams said.

Using nationally representative data from the 2009-2011 Medicare Expenditure Panel Survey, the researchers found that 1 in 20 Americans (5%) aged 18 years and older living in the community (or about 12 million people) suffer three or more chronic illnesses in addition to having a functional impairment.

Patterns of healthcare use and spending for this "high-need" group differ from those of other adults, including the 79 million with three or more chronic illnesses but no functional limitation, the researchers report.

For example, for high-need adults, average yearly per-person spending on healthcare services and prescription drugs is nearly three times the average for adults with multiple chronic diseases only (no limitations) and more than four times the average for all US adults.

High-need adults spend more than twice as much on average on out-of-pocket expenses as adults in the total population, yet their annual median household income is less than half that of the overall population. Out-of-pocket spending for adults with multiple chronic diseases and no functional limitation is about a third less than that of high-need adults, and their annual median income is about the same as adults in the overall population.

Table. High-Need Adults Have Higher Healthcare Spending and Out-of-Pocket Costs



"We are asking the sickest people to pay the most, when they have the lowest incomes," coauthor Gerard Anderson, PhD, a professor at Johns Hopkins Bloomberg School of Public Health, said in the news release.

The report also notes that 20% of high-need adults went without or delayed receiving needed medical care or prescription medication in the past year, compared to just 8% of all Americans.

According to the authors, more than half of high-need adults are older than age 65, and nearly two thirds are women. They are also less educated than US adults overall and are more likely to be white, low-income, and publicly insured.

Improving Care for High-Need Patients

A separate report released today by the Commonwealth Fund looks at health system performance for high-need patients and finds significant room for improvement.

For example, it notes that the vast majority of high-need adults (96%) have some kind of health insurance, but that doesn't always guarantee access to care.

Thirty-two percent of high-need adults with private insurance have unmet medical needs, as do 28% of those with Medicaid, 15% of those with Medicare, and 14% of those with both Medicare and Medicaid. High-need Medicaid beneficiaries have a harder time getting referrals to specialists compared to high-need Medicare beneficiaries or individuals with private insurance, the report notes.

The authors say that efforts to improve healthcare and rein in costs have centered on patients with multiple chronic illnesses, and they say even more priority should be given to people with multiple chronic conditions and functional limitations.

"The health care system needs to work better for the highest-need, most-complex patients. This study's findings highlight the importance of tailoring interventions to address their needs," the authors write.

Specifically, they recommend that private insurers consider how benefits and provider networks can be improved to help high-need enrollees. State policy makers should consider how to ensure that high-need adults enrolled in Medicaid are able to access needed specialty care, they advise. Also, initiatives that seek to improve care for high-need patients should target those most apt to benefit and tailor programs to their unique characteristics and needs.

The Commonwealth Fund. "High-Need, High-Cost Patients: Who Are They and How Do They Use Health Care?" Published August 29, 2016.

http://www.commonwealthfund.org/publications/issue-briefs/2016/aug/high-need-high-cost-patients-meps1

The Commonwealth Fund. "Health System Performance for the High-Need Patient: A Look at Access to Care and Patient Care Experiences." Published August 29, 2016.

http://www.commonwealthfund.org/publications/issue-briefs/2016/aug/high-need-high-cost-patients-meps2


*Please feel free to share/signal-boost*

Given that concerns about "opioid-induced hyperalgesia" are one of the drivers behing legislation and medical-policy decisions that affect pain patients, it's important to be aware that it *has never actually been proven to exist in humans*, and that rodent studies should not be extrapolated to a patient population without, you know, *actual research on human subjects.*


***

"Complexities of Opioid-Induced Hyperalgesia Poorly Understood"

NATIONAL HARBOR, MD — Opioid-induced hyperalgesia is among the most pressing concerns in the national discussion of opioid addiction, underscored by the US Food and Drug Administration's (FDA) call for clinical trials to better understand the risks, but the issue is mired in more complexities and confusion than many may even realize, an expert says.

( More )

Marginal Revolution: "Ferguson and the Modern Debtor's Prison"

Debtor’s prisons are supposed to be illegal in the United States but today poor people who fail to pay even small criminal justice fees are routinely being imprisoned. The problem has gotten worse recently because strapped states have dramatically increased the number of criminal justice fees….Failure to pay criminal justice fees can result in revocation of an individual’s drivers license, arrest and imprisonment. Individuals with revoked licenses who drive (say to work to earn money to pay their fees) and are apprehended can be further fined and imprisoned. Unpaid criminal justice debt also results in damaged credit reports and reduced housing and employment prospects. Furthermore, failure to pay fees can mean a violation of probation and parole terms which makes an individual ineligible for Federal programs such as food stamps, Temporary Assistance to Needy Family funds and Social Security Income for the elderly and disabled.

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Mother Jones: "In Ferguson, Cops Hand Out 3 Warrants [and average $321 in fines] Per Household Every Year"

We've all seen a number of stories like this recently, and it prompts a question: why are police departments allowed to fund themselves with ticket revenue in the first place? Or red light camera revenue. Or civil asset forfeiture revenue. Or any other kind of revenue that provides them with an incentive to be as hardass as possible. Am I missing something when I think that this makes no sense at all?

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New York Times: "The Expanding World of Poverty Capitalism"

Collection companies and the services they offer appeal to politicians and public officials for a number of reasons: they cut government costs, reducing the need to raise taxes; they shift the burden onto offenders, who have little political influence, in part because many of them have lost the right to vote; and it pleases taxpayers who believe that the enforcement of punishment — however obtained — is a crucial dimension to the administration of justice.

As N.P.R. reported in May, services that “were once free, including those that are constitutionally required,” are now frequently billed to offenders: the cost of a public defender, room and board when jailed, probation and parole supervision, electronic monitoring devices, arrest warrants, drug and alcohol testing, and D.N.A. sampling. This can go to extraordinary lengths: in Washington state, N.P.R. found, offenders even “get charged a fee for a jury trial — with a 12-person jury costing $250, twice the fee for a six-person jury.”

This new system of offender-funded law enforcement creates a vicious circle: The poorer the defendants are, the longer it will take them to pay off the fines, fees and charges; the more debt they accumulate, the longer they will remain on probation or in jail; and the more likely they are to be unemployable and to become recidivists.

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Washington Post: "How municipalities in St. Louis County, Mo., profit from poverty"

Some of the towns in St. Louis County can derive 40 percent or more of their annual revenue from the petty fines and fees collected by their municipal courts. A majority of these fines are for traffic offenses, but they can also include fines for fare-hopping on MetroLink (St. Louis’s light rail system), loud music and other noise ordinance violations, zoning violations for uncut grass or unkempt property, violations of occupancy permit restrictions, trespassing, wearing “saggy pants,” business license violations and vague infractions such as “disturbing the peace” or “affray” that give police officers a great deal of discretion to look for other violations. In a white paper released last month (PDF), the ArchCity Defenders found a large group of people outside the courthouse in Bel-Ridge who had been fined for not subscribing to the town’s only approved garbage collection service. They hadn’t been fined for having trash on their property, only for not paying for the only legal method the town had designated for disposing of trash.

{snip}

Quinn describes one homeless girl who had been written up for violating an occupancy permit restriction. To simply reside in St. Louis County, you have to register your residence with the local government. What that entails varies from town to town. In the town of Berkeley, for example, new tenants must obtain an occupancy permit from the Inspections Department of the City of Berkeley. A permit costs $20, and requires a valid driver’s license or identification card. If your license has been suspended due to an outstanding warrant, you can’t move in. A permit includes the names of the people legally allowed to live at the residence. If you want to add additional names or change a name, it’s an additional $25 and a signed authorization from the landlord. And again, you’ll need an ID.

In theory, occupancy permits are to prevent fire hazards and overcrowding. But they can also be another way for towns to generate revenue. Quinn’s client, for example, was the victim in a domestic abuse incident. But when the police arrived, they checked her occupancy permit, which only allowed for one person to reside at the apartment. The officers then cited the woman and her boyfriend $74 each for violating the permit. When Quinn protested that the law makes no effort to distinguish visitors from unlawful residents, the municipal prosecutor stated that “nothing good happens after 10pm” when single men and women are alone together — a sentiment later echoed by the judge. Other attorneys say that the permits are sometimes even used to enforce anachronistic laws prohibiting cohabitation of unmarried couples.

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I think this quote from the New York Times article sums it up:

What should be done to interrupt the dangerous feedback loop between low-level crime and extortionate punishment? First, local governments should bring private sector collection charges, court-imposed administrative fees and the dollar amount of traffic fines (which often double and triple when they go unpaid) into line with the economic resources of poor offenders. But larger reforms are needed and those will not come about unless the poor begin to exercise their latent political power. In many ways, everything is working against them. But the public outpouring spurred by the shooting of Michael Brown provides an indication of a possible path to the future. It was, after all, just 50 years ago — not too distant in historical terms — that collective action and social solidarity produced tangible results.

So, the next time someone bitches about a poor person who is TOTALLY undeserving and obviously makes bad choices because they have a cell phone and a television and are still struggling with poverty, send them this chart.

The cost of cell phones, televisions, and personal computers have dropped radically over the past 9 years, whereas costs of education, health care, and child care have skyrocketed.

Yes, some poor people have a cell phone or a tablet and are still actually living in poverty -- because they need to educate themselves and their children, need childcare to work, or are dealing with price increases in almost every basic expense (food and vehicle maintenance rose moderately, as well) . . . but the price for cell service has dropped dramatically.

With many employers having online applications, many states' unemployment offices requiring online access, and more and more libraries closing, so that the poor have fewer opportunities to get online for free, it makes perfect sense for someone living in poverty to have a cell phone, particularly a smartphone, because it gives them a chance to be competitive in our current economic climate.

Don't judge by appearances -- you can't tell if someone is "really" poor, or disabled, or mentally ill, just by looking at them and inventorying their possessions.





Source.