Appalachian Health Falling Further Behind Nation's

A new report shows just how far Appalachia has fallen behind the rest of the country on key health measures such as rates of cancer, heart disease and infant mortality. Researchers say the region’s health gap is growing and they hope the data they’ve compiled will spur new approaches to health care. 

The 400-page report from the Robert Wood Johnson Foundation, the Foundation for a Healthy Kentucky, and the Appalachian Regional Commission used all publicly available data to show where people are sick and just how sick they are throughout the 13-state Appalachian region.

While the report found some regional improvement in the rates of cancer, heart disease and diabetes, people in Appalachia have higher rates compared to other regions. The gap between the health of Appalachians and the rest of the country continues to widen as health outcomes improve more rapidly elsewhere. 

For example, Appalachia use to have an infant mortality rate 4 percent higher than the rest of the country. Now that rate is 16 percent higher, according to the research.

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ARC Co-chair Earl Gohl said the region’s health data have never been examined in this way.

“What we’ve tried to do is to bring together in one place and to show how the region fits in with the rest of the country and look at how rural and urban communities differ,” he said.

Gohl said the ARC is focused on the connections between health and economic development.

“We look at these issues and these challenges as something that limits and holds us back in terms of the growth of the region,” he said.

Ben Chandler, president and CEO of the Foundation for a Healthy Kentucky, said he was startled that the report showed that Kentuckians are even sicker than most of Appalachia.

“We really are the cancer capital of the country in Kentucky,” he said. Kentuckians also have the highest rates of diabetes among Appalachian states.

Chandler said the report clearly shows the deadly consequences that those high rates of disease can have. One measure the report highlights is years of potential life lost due to higher rates of mortality. According to the report Appalachians once had life span just 1 percent shorter than the rest of the country. Now the number has risen to 25 percent. 

“As starling a number as any is the years of potential life lost,” Chander said. “In other words, people are dying sooner than other people.”

The report is titled “Creating a Culture of Health in Appalachia,” and is the first of two reports intended to point toward possible remedies as well as pointing out problems. A second report to be released this fall, called “Brights Spots,” will showcase communities improving their health. The ReSource profiled the research underway for that report in Wirt County, West Virginia.

Chandler said the report should give policy makers across the region a sense of urgency on health matters.

“Not only do we have a serious problem we have to act on it immediately,” he said.

Trump Administration Halts Mining Health Study

The Trump administration’s Department of the Interior has asked the National Academy of Sciences to suspend research into the health effects of mountaintop removal coal mining.

A team from the National Academies of Sciences, Engineering, and Medicine was established last year for a two-year study. The committee has been conducting hearings and investigating accumulating science on the health impacts of surface mining, especially the practice known as mountaintop removal.

A statement from the National Academies said that the Interior Department’s Office of Surface Mining Reclamation and Enforcement sent a letter calling off the study until an agency-wide review of existing grants and projects can be conducted.

The Interior Department says its review is due to changing budget conditions. But environmental groups quickly issued statements condemning the decision. The Ohio Valley Environmental Coalition called it an “attack on science,” and the Sierra Club called it “infuriating” that the administration would impede the ability of mining communities to learn about the health effects of mining.

Indiana University Environmental Health Professor Michael Hendryx has conducted substantial research into possible health correlations associated with living near surface mining operations. Hendryx said in an email that he worries the review is politically motivated given the Trump Administration’s “anti-science, pro-coal orientation.”

Hearings previously planned for this week in Kentucky will proceed. A release from the Academy calls the study important and says the academy is ready to resume work as soon as the review is complete.

Data Fix: Cities Seek Better Information on Opioid Epidemic

Paramedics and police are already in the hotel room when Kyle Simpson walks in.

“What happened?” he asks.

A 37-year-old man in the room is barely conscious–just revived by the overdose reversal medication NARCAN.

Law enforcement officers survey the scene. They’ve found more heroin “rocks” on a table. One officer interviews a crying woman who was with the man when he stopped breathing.

“He overdosed on heroin. He snorted it,” a paramedic responds.

Simpson is an Operations Major with Louisville Metro’s Emergency Medical Services. He says this won’t be the only scene like this tonight due to the opioid crisis.

“It has taken effect, and it has got a hold on this city.”

First responders like Simpson have learned a lot about how to deal with the epidemic. But he says he could use more data to better track overdoses.

“We could maybe establish patterns and maybe put an end to this.”  

Tracking the Crisis

The Louisville Metro EMS is moving to new data tracking technology to make better use of the information they get from each overdose call.

“We need to know let the hospitals know that they’re going to be seeing an increase,” Public Information Officer Mitchel Burmeister said. “We need to make our EMS responders aware and our police and fire responders aware. And then we need to get the word out to the community.”

After a spike in overdoses earlier this year, federal officials approached LMES about adopting a program created by the Washington/Baltimore High Intensity Drug Trafficking Area.

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Louisville Metro EMS dispatchers.

The city previously tracked overdoses events with data pulled from multiple sources which wouldn’t provide immediate results.

The new program —provided at no cost to Louisville Metro– will have first responders enter accurate data into an easily navigated interface. That will update the agency’s private database in real time.

“We want to make sure that the data that we are collecting for this heroin epidemic is consistent and coordinated,” Burmeister said.

Louisville’s project is among a handful of efforts in the Ohio Valley aimed at filling surprising gaps in the information available about the scope and impact of the crisis. For all the attention the epidemic has received, timely, reliable data are often lacking.

A presidential commission on the opioid crisis includes a recommendation to improve data sharing in its interim report released this month, and health researchers are warning that a lack of good information could hinder the response to the crisis and lead to poor decision making. 

Mind the Data Gap

Public health researchers have started to sound the alarm about impediments to information vital to their work to better understand the opioid epidemic and inform public policy decisions.

Researchers say federal funding cuts threaten some important national data sets and others are not being regularly updated. Some information sources kept by law enforcement agencies are not made available to researchers.

Dan Ciccarone with the University of California San Francisco has studied heroin use for nearly two decades. He said that in that time it has become more difficult for him to get law enforcement information on the type and nature of drugs agents have seized.

“We need some cross-pollination,” he said. “We need to get the information to other people.”

Law enforcement and public health researchers both want to find solutions to ending the opioid crisis. But they don’t speak the same language when it comes to their methods.

Ciccarone said enforcement agencies have the raw data researchers need to study things such as the potency and production of heroin. But the agencies tend to keep that information to themselves, perhaps out of concern that drug users or producers might exploit it.

“Maybe you don’t tell the users, then,” Ciccarone said. “Maybe you just tell emergency doctors. They might want to know if a new brand of fentanyl came in last week. All I’m saying is, we’re not doing enough.”

Other numbers gathered by state and county governments are often simply not timely or complete enough to keep up with the pace of a rapidly changing epidemic.

For example, data on overdose deaths in Kentucky, Ohio, and West Virginia are presented on different time periods and levels of detail. Overdose victims might be identified according to place of residence in one set of data, but by place of death in another. Different state agencies also follow different criteria for reporting information about the specific drugs involved in an overdose case. Such inconsistencies make it tough to get a full, regional picture of the toll the epidemic is having.

Insight into ODs

An innovative project in Cincinnati shows how better data can help.

The city’s Open Data Portal gathers data from various departments in order to track everything from government spending to trash pickup.

The city’s data department was also interested in overdose data in the local EMS logs. As part of the public Cincy Insights online project, Chief Data Specialist Brandon Crowley designed an interactive map that showed the overdose EMS calls by neighborhood while protecting private information.

“It makes sense that if we’re interested in looking at it, we’re sure the public would be interested in looking at it,” Crowley said.

As in Louisville, the idea first came after a dramatic series of overdose events in 2016. Originally, Crowley said, the city simply wanted citizens to see what was going on in their neighborhoods. But then local entities combating the opioid crisis took an interest in the data.

By tracking the times that overdose calls came in, first responders were able to look for patterns and anticipate when they need staff on hand. By tracking locations of the calls, the city hopes people who lead treatment programs will learn where their services are needed most.

“We recognize a visualization is not a panacea for this epidemic,” Crowley said. “But we realize that it can be used as a tool to help us lessen the number of events.”

The project has gained attention from outside Cincinnati as well, with other municipalities inquiring about how they could set up their own system.

Crowley said he believes that with the right technical knowledge and infrastructure, rural Appalachian communities can also develop similar inexpensive tracking systems.

The city hopes to add new data sets to the page. By teaming up with area hospitals and treatment centers, for example, they could track the outcomes of overdose events and the effectiveness of treatment.

Tracking Treatment

States are making efforts to fill in the data gaps as well.

West Virginia Gov. Jim Justice recently signed H.B. 2620, creating a state Drug Control Policy office.

Part of the office’s responsibilities will be to create a data repository in order to seamlessly share data among multiple state agencies.

“This will help us surpass a couple of the challenges that we have identified over the past few years in being able to both collect data in a uniform basis as well as then report it out in a timely and transparent manner,” State Health Officer Dr. Rahul Gupta said.

Dr. Gupta said data-driven work is important to making informed decisions regarding the opioid crisis.

Many agencies across the bureau are collecting different data sets related to understanding the problem. But Dr. Gupta would like to seem them more aggressively assimilate data related to prevention and treatment.

The agency recently did a study on a May, 2016, event in Huntington in which 26 people overdosed in the span of a few hours.

“What we found was, of these people that went to the hospital with an overdose, none of these people actually entered a treatment program,” Dr. Gupta said.

“What data will help us with is to be able to create programming for individuals that fits the needs of individuals.”

A Proactive Approach

Dan Ciccarone said this type of data will be essential to getting a well-rounded look at the opioid crisis.

For example, Ciccarone said, a new white powder version of heroin is coming from Mexico. But with researchers being denied access to data — like that from the old System to Retrieve Information from Drug Evidence or the new the National Seizure System — the public won’t know how deadly the substance could be.

“For all we know, that alone is dangerous.”

Without a better understanding of the drugs, Ciccarone believes the approach to the crisis will continue to be reactionary, rather than proactive.

Researchers writing in a 2015 white paper identified a dozen data sets that were severely lacking just regarding the use and abuse of prescription opioids. Those included information categories such as “Thwart Rate of Forgery and Doctor Shopping Attempts” and “Prevalence of Drug-Seeking Behaviors.”

The authors of the white paper called on a “variety of sources, including federal agencies, proprietary systems, national organizations, academic institutions, industry, and state and regional government agencies” to step up their efforts to collect much needed data.

The new information systems in cities like Louisville and Cincinnati won’t fill every gap, but here in ground zero of the nation’s opioid crisis, every bit of data helps.

ReSource member station WFPL reporter Jacob Ryan contributed reporting for this story.

Memory Sunday: Churches Spread Alzheimer’s Awareness

The church choir in bright blue robes swayed and testified on a hot summer Sunday.

Pastor Anthony Everett, in his own robe of orange and brown, preached to his “saints” of Wesley United Methodist Church and they called back their approval with a staggered chorus of “Amen!”

But this Sunday, Memory Sunday, was different. Half way through the high-energy service was a quiet call to remember families coping with Alzheimer’s disease. From the pulpit came a call for the names of the suffering and after a brief silence, the response rolled through the pews.

Today nearly everyone knows someone with Alzheimer’s. But decades after the disease first came into the public consciousness, the Alzheimer’s Association calls the high rates among African-Americans a “silent epidemic.”

There are several things at work, according to Fred Schmitt, a researcher at the Sanders-Brown Center on Aging at the University of Kentucky. First, there is a lack of research. Studies have shown that African-Americans have consistently higher rates of Alzheimer’s than whites. Study findings, however, range from 14 percent higher to 100 percent higher.

Part of that is due to an ugly cultural legacy perhaps most widely known because of an infamous study involving the Tuskegee Airmen, Schmitt said. According to the Centers For Disease Control and Prevention, hundreds of black men were part of a 40-year study of syphilis but were never fully made aware of the true purpose of the study and did not receive adequate treatment.

Those kind of ethical breaches continue to keep some African-Americans from volunteering for  medical research, Schmitt said.

There are also other more quantifiable challenges, said Schmitt.

In general there are lot of barriers for health care in African-Americans. And there are lot of health disparities as a result,” he said. Some of the health factors that can contribute to Alzheimer’s, diabetes, and high blood pressure are also found in high rates among African-Americans.

Spreading the Word

That’s where Memory Sunday comes in. University researchers partnered with a national non-profit called Balm In Gilead which creates education programs for African-American churches. It also operates the Brain Health Center for African Americans. Schmitt had hoped one or two churches would participate in this first year. There were more 60 churches from Los Angeles to Orlando, including more than a dozen in Kentucky and Ohio.

Memory Sunday’s sharpest focus is reshaping how African-American communities view Alzheimer’s.

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Ohio Valley ReSource
Wesley United Methodist Church Pastor Anthony Everett with a congregant.

Everett said that African-Americans too often simply accept dementia and Alzheimer’s as a natural part of getting older. He is hoping Memory Sunday will help education people to recognize Alzheimer’s for “the actual disorder that it is.”

He said his congregation includes several professors at the University of Kentucky, including his wife, and medical research opportunities are often announced from the pulpit or in the church newsletter. But he said the fear of not being treated fairly by the medical community lingers.

That may be where the prayer really comes in,” he said.

Everett said his own grandmother had Alzheimer’s and he has several members of his congregation who are caring for parents. He knows people within his congregation are suffering.

Memory Sunday will continue to grow as an annual event, he said. The University of Kentucky and Balm in Gilead have also created a downloadable, online workbook to help churches help both the sick and their caregivers. It includes information on Alzheimer’s, specific strategies to help caregivers, and suggestions for relevant prayers and scripture to create a supportive network.

That’s a role the pastor said seems uniquely suited to tight-knit congregations like his.

Our focus is to nurture and to always be the type of congregation that Jesus called us to be.”

A call that could help end a silent epidemic.

Report Reveals Contaminants In 'Legal' Water

An environmental group’s new report shows a broad range of contaminants occur in many drinking water systems in the Ohio Valley, even though the water meets federal requirements. The research highlights the gap between what regulations require and what many scientists and health advocates recommend for safe drinking water.

The Environmental Working Group compiled the report from data it collected from more than 50,000 public water utilities across America. The EWG created a scale based on the most stringent health standards and latest science and research at one end (like the California health standards which are generally more protective of health), and federal guidelines at the other. The online tool EWG created shows where a water system’s detected level of contaminants falls in that range.

“Legal doesn’t necessarily mean safe. And just because there’s a legal limit for the contamination doesn’t mean that’s the ideal level or the safe level, necessarily, of that contaminant,” EWG senior scientist David Andrews said.

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Ohio Valley ReSource

What's in your water? Find out here >>

At the Source

Paducah Water, located on the confluence of the Ohio and Tennessee Rivers in west Kentucky, is among the many regional water systems in the report. General Manager Bill Robertson stood among the pumps sending freshly treated water out into the city’s system of pipelines.

“The water is at its best quality when it leaves here; and it has to go up the pipes to go to the pumps,” Robertson said. “It has to go through tanks and it has to go through your plumbing at your house and it can only do one thing, and that is to degrade.”

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Ohio Valley ReSource
Paducah Water General Manager Bill Robertson.

But clean as the water is at this point, the EWG report identified contaminants in Paducah’s water that could pose health risks, even though the water system meets legal standards.

Water sampling data from 2010 and 2015 show five chemicals in Paducah water that the EWG says could increase risks of cancer and other health issues if users are exposed over long periods of time.

Robertson read from the group’s data.

“So what do we have? Atrazine…Atrazine is everywhere. Atrazine is pre-emergent herbicide farmers use,” Robertson said.

He said the chemical is less present now than it used to be because farmers are more diligent in application. But it is still common in water.

More than Monitoring

There are at least 30 contaminants the EPA has flagged for monitoring under the agency’s third Unregulated Contaminant Monitoring Rule. Every five years the contaminants on the list are reviewed according to what may be present in drinking water. The data collected are used to inform regulatory decisions. Chemicals such as chlorate, which is used to disinfect water, are monitored through the unregulated contaminant water rule.

“Chlorate can come from a lot of places. It can come from explosives, it could come from fireworks. It can come from degradation of sodium hypochlorite, which is bleach,” Robertson said.

According to the EWG the Ohio Valley is riddled with wastewater treatment facilities, energy companies, and chemical plants that discharge contaminants that often show up in water systems. These can be pollutants used in industrial processes or the byproducts of disinfectants used to treat waste.

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Ohio Valley ReSource

The EWG site shows West Virginia with the most contaminants, with 83 chemicals flagged between 2010 and 2015. Ohio has 81 and Kentucky showed 56 contaminants.

EWG’s Andrews said the EPA is “woefully behind in setting new regulations for emerging contaminants.”

Info On Tap

The EWG online tool allows anyone who relies on a community water system to enter a location to get results specific to a water system. For each of the drinking water contaminants found in that water source, the EWG identifies the legal limit, if one exists, and a health based limit derived from best available science and protective state standards.

One frequent contaminant Andrews highlighted is hexavalent chromium, also sometimes called Chromium-6. He calls this the “Erin Brockovich contaminant” after the activist who brought attention to contamination in the Southern California town of Hinkley, and who was the subject of the eponymous 2000 film.

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The Paducah Water lab tests a variety of different water samples, from raw water (far right) to purified water (far left).

The EWG site places the health-based limit for hexavalent chromium at just 0.02 parts per billion, an extremely small measure. “This is based on concern that ingestion could cause stomach cancer or intestinal cancer based on actual federal testing of animals,” Andrews said.

But despite those health concerns, Andrews said, the EPA standard is far weaker, and the agency has been unable to upgrade its standards on the chemical over the past decade or even to complete a scientific review of this chemical.

Andrews blames pushback from industry lobbyists for slowing the review of the regulation.

That includes the electric power industry. The chemical was used in cooling towers and in electricity generation.

“Then there’s also been pushback from the chemical industry that has used this in everything from chrome plating to treatments for leather, wood and other materials,”  Andrews said.

Andrews said the EWG is “trying to really just provide a resource that enables everyone across the country to become more educated about their drinking water.”

Consumer Confusion

The world of water treatment is complex. Environmental consultant Marc Glass, who works with Downstream Strategies in Morgantown, West Virginia, said that nearly every water system he has looked at has had at least one of the disinfection byproducts the EWG report calls attention to.

“And that’s due to the sort of nexus between protecting against the long-term risks and short-term risks,” Glass said. Job number one, after all, is to disinfect water so that consumers won’t get sick. That’s the short-term. But in the long-term, some of the disinfectants can produce byproducts that carry other health risks.

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Ohio Valley ReSource
The high service pump station is the last stop at Paducah Water before the water is passed on to the consumer.

Kentucky Energy and Environment Cabinet Spokesman John Mura has a problem with how EWG presents the information.

“It is misleading,” he said. “They’re pairing Kentucky’s levels with California guidelines when we are held to maximum contamination levels set by the EPA.”

Mura doesn’t want people to think that the state’s water is unsafe. He said that 99.7 percent of the state’s utilities are federally compliant and the state’s division of water is aware of the disinfectant byproduct issues as well.

“A lot of water companies are dealing with a different level of restrictions on disinfection byproducts,” Mura said, and added that the state has been working with companies to address these issues in recent years.

“We’re trying to limit the amount of time that the disinfectant is in contact with the organic matter, the carbon based organic matter,” Mura said. “And that really is dependent on how each operator is doing it. So there’s no one solution that fits all.”

Glass is concerned that water consumers who see the EWG information might begin to lose faith in their tap water and turn to bottled water. But bottled water, he said, isn’t subject to the same testing requirements as public utilities.

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Ohio Valley ReSource
As many as 20 million gallons of water a day can be filtered by the three filters at the Paducah Water Filter Station.

“And it’s a lot more expensive by volume, so if you are going to use bottled water for all your drinking and cooking needs you’d spend a lot of money and you still wouldn’t have even the same confidence that you can have in your public water supply,” Glass said.

Trade-offs

Bill Robertson stands by Paducah Water’s product.

“Well there’s always more we can do,” he said. “It’s just at what cost, and at some point you really reach a point of diminishing returns where it costs a whole lot of money to just make a very small incremental improvement in the water.”

Robertson said Paducah Water can supply one thousand gallons of water to a household for just $4, and that water will meet federal standards. For those who want water that’s more protective of health carbon filters and other water purifiers can reduce many contaminants.

Healthy Debate: What The Republican Health Bill Taught Us About Medicaid

It’s hard to find a spot on the map where the proposed repeal of the Affordable Care Act would have a bigger effect than in the Ohio Valley. By one measure, for example, the proposal could mean West Virginia’s rate of people who lack health insurance would climb by nearly 300 percent — the biggest such change in the country. The projected declines in Kentucky and Ohio are also more than twice the national average. This is largely due to proposed changes in Medicaid.

As Congress debated Republican health measures that would roll back the ACA’s expansion of Medicaid, the full extent of Medicaid’s role in Kentucky, Ohio, and West Virginia gained more public attention. Rural hospitals, people living with disabilities, displaced coal miners, addiction treatment services, care for the elderly — all could be affected by cuts to Medicaid.

That rising awareness has focused public attention, sparked protest, and put some regional lawmakers on the spot.

Medicaid’s Reach

Until the recent debate, Medicaid was most commonly known for providing primary medical care to the poor. According to the Kaiser Family Foundation there are 4.6 million people served by Medicaid  in Kentucky, Ohio, and West Virginia.

As the ramifications of proposed changes to the ACA became clear, more health care providers began to speak up about the widespread but less obvious ways that Medicaid supports their work.

Hospital officials say Medicaid has been crucial in keeping rural hospitals open. The Kentucky Hospital Association estimates that rural hospitals and health centers in the state receive about 70 percent of their revenue from Medicare and Medicaid.

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Ohio Valley ReSource

Teresa Fleming is the financial officer for one of those rural health centers, Mountain Comprehensive Care, which serves five eastern Kentucky counties. Fleming said the expansion of Medicaid came just as many coal miners in the region were losing jobs and health coverage.

“The Affordable Care Act came at the right time and basically correlated with the mine layoffs,” she said. “So that gave our patients safety or at least some security that they would have some kind of coverage so they could go see their providers.”

Services supported by Medicaid also allow people with disabilities to live in their communities and outside of institutions. According to the Kaiser Family Foundation nearly 760,000 people with disabilities in Kentucky, Ohio, and West Virginia depend on Medicaid.

Jeff Edwards, executive director of Kentucky Prevention and Advocacy, said those services allow people with disabilities to lead fuller lives and contribute to their communities.

“When we hear they are going to dismantle Medicaid we are thinking about adults, people who need some help in the morning to get dressed and get in a wheelchair but then go on to work a 40-hour-a-week job,” he said.

If those services are cut, he said, “We will start filling institutions back up.”

The Addiction Factor

The ACA allowed more people suffering with addiction to get more resources, according to treatment specialists throughout the region.

Looking just at numbers from the Medicaid expansion through the ACA, researchers at Harvard and New York University estimate nearly 215,000 additional people were able to seek addiction and mental health treatment.

In Portsmouth, Ohio, a city hit hard by the addiction crisis, the health department was able to connect more people to treatment thanks to the coverage gains.

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Ohio Valley ReSource
Portsmouth, Ohio, public health nurse Lisa Roberts saw what happens when addiction treatment abruptly ends. “It could just be catastrophic.”

The progress they’ve made could be lost under the proposed repeal plans because Scioto County, where Portsmouth is located, also struggles with unemployment.

“So many of our people depend on types of insurances that would go away,” Lisa Roberts, a public health nurse with the department said. “We just have a lot of people here who don’t have access to good, regular, employee-covered health insurance.”

This resonates with Ohio Valley politicians considered to be key votes in the repeal effort.

Republican Senators Rob Portman of Ohio and Shelley Moore Capito of West Virginia both cited the potential loss of coverage and funding for addiction treatment as reasons they would oppose the current Senate plan.

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For the Ohio Valley ReSource

Senate leaders attempted to win back their support with the promise of $45 billion in addiction treatment funding spread out over about a decade, up from $2 billion in an earlier version of the bill.

But treatment specialists and state leaders say that’s far from enough to make a difference.

Ohio’s Republican Gov. John Kasich said on ABC’s “This Week” that the funding was “like spitting in the ocean. It’s just not enough.”

The left-leaning Center for American Progress estimates that Kentucky, Ohio, and West Virginia would get a $443 million share of the funds per year over that time period. But the CAP analysis estimated the full cost of treatment in Ohio alone would be over $2 billion by 2026.

It’s difficult to predict these numbers with complete accuracy due to the changing nature of the opioid epidemic and state investments in more treatment efforts. But numbers like these are enough to give Senators Portman and Capito pause when considering a repeal effort.

Public Protests

Sen. Capito and other regional lawmakers have also been the focus of newly energized activists who have organized numerous sit-ins, marches, and other events that saw people taking to the streets, even in some places that are deep-red in their politics.

Credit Mary Meehan / For the Ohio Valley ReSource
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For the Ohio Valley ReSource

The demonstrations frequently included people with disabilities or health problems advocating for themselves — people in wheelchairs or those with chronic conditions who couldn’t stand for long but who turned out anyway. Many independent, grassroots groups coordinated via social media to create “pop up“ protests at every turn of the legislative process.

Demonstrators were also fueled by fresh reminders from emerging science showing just how important health care access is in the area.

A study published in the Journal of the American Medical Association’s publication JAMA Internal Medicine made headlines during the health debate for its conclusions that in parts of the Ohio Valley people can now expect to live shorter lives than their parents did.

The study found that Kentucky, Ohio, and West Virginia include 27 of the 50 counties with the country’s worst trends in life spans. Of the 10 counties in the U.S. with the worst declines in life expectancy, eight are in Kentucky.

It’s difficult to say what effect the activism has had on decision makers, but the correlations provide some indication. After activists staged sit-ins in her offices, for example, Sen. Capito issued a statement voicing her concerns with the Senate’s repeal-and-replace bill. “I did not come to Washington to hurt people,” she wrote.

Conflicting Claims

The protesters and Republican supporters of the bill had starkly conflicting messages about Medicaid’s future. Protesters often cited the Congressional Budget Office estimate that 22 million people could become uninsured under the Republican plan, due in part to Medicaid changes.

Kentucky Republican Sen. Mitch McConnell, the Senate’s Majority Leader, had a very different message when responding to a protest at a recent event in Paducah, Kentucky.

“Nothing that we’ve advocated so far would cause anybody currently on Medicaid to be taken off of Medicaid,” he said.

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Ohio Valley ReSource
Sen. Mitch McConnell faces protesters at events around Kentucky.

Simon Haeder is an assistant professor at the John D. Rockefeller IV School of Policy and Politics at West Virginia University, where he focuses on health care policy.  Haeder said McConnell parsed his words carefully to make that argument, emphasizing people who “choose” to leave. That would include people who signed up for health insurance only because the original ACA mandated that coverage.

But Haeder points out that many who qualified for Medicaid under the ACA’s expansion would likely make that “choice” to leave Medicaid only because they would find they could not re-enroll after revisions to guidelines for Medicaid qualification. Many families are eligible for Medicaid under expanded ACA income guidelines gave that option to more working class people. If those expanded income guidelines are rolled back, Haeder explained, people wouldn’t technically get “kicked off” of Medicaid but they would no longer be eligible to continue their Medicaid enrollment because their income was too high.

“The semantics are there to work with, I guess,” Haeder said of McConnell’s claim, “but the reality is very, very different.”

Others, he said, could be pushed off Medicaid and not be able to afford private insurance premiums. It’s also hard to predict an ever-shifting population of those who are eligible for Medicaid.

Not Over

Haeder said the ongoing debate helped educate people about the scope of Medicaid. A wide variety of groups from the American Medical Association and AARP to grassroots activists voiced their concerns.  Haeder said that despite the apparent demise of the latest Senate bill, that conversation will continue, as will the legislative efforts to change the health care system.

“A lot of the stuff that is being discussed like the cuts to Medicaid can come back really, really quickly,” he said. “For example, in the budget negotiations coming up. It is not over by any stretch of the imagination.”

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