Dr. Jean-Jacques Muyembe says his story starts in 1973. He had just gotten his Ph.D. at the Rega Institute in Belgium. He could have stayed in Europe, but he decided to return to Congo, or what was then known as Zaire, which had only recently attained independence from Belgium.

If he had stayed in Belgium, he says, he would have been doing routine lab work. But in Congo, he would be responsible for the “health of my people.”

“But when I arrived here the conditions of work were not good,” he says. “I had no lab; I had no mice for the experimentation, so it was very difficult to work here.”

Being a microbiologist without mice or a lab was useless, so he took a job as a field epidemiologist. In 1976, he was called to an outbreak of a mysterious disease in central Congo.

Lots of people had died of something that presented like yellow fever, typhoid or malaria. Muyembe arrived to a nearly empty hospital. He says people thought the infection was coming from the hospital, and he found only a mother and her baby.

“I thought that it was malaria or something like this,” he says. “But in the night the baby died, so the hospital was completely empty.”

By morning, as the people of Yambuku heard Muyembe had been sent by the central government in Kinshasa, they started lining up at the hospital hoping he had medicine for them.

“I started to make physical exam,” he says. “But at that time we had no gloves in the whole hospital.”

And, of course, he had to draw blood, but when he removed the syringes, the puncture would gush blood.

“It was the first time for me to see this phenomenon,” he says. “And also my fingers were soiled with blood.”

Muyembe says he washed his hands, but it was really luck that kept him from contracting an infection. He knew immediately this was something he’d never seen before. Some of the Belgian nuns in the village had been vaccinated against yellow fever and typhoid, but this disease was different. It was killing people fast. When he took liver samples with a long needle, the same thing would happen — blood would continue to gush.

He persuaded one of the nuns who had the disease to fly with him to Kinshasa. He took blood samples before she died and sent them to Belgium, where they had an electron microscope to try to identify the culprit. Scientists there and in the United States saw this was a new virus that caused hemorrhagic fever.

They named it Ebola, after a river near the village.

The discovery, says Muyembe, was thanks to a “consortium of research.”

But Google “Who discovered Ebola?” and you get a bunch of names — all of them white Western males. Dr. Jean Jacques Muyembe has been written out of history.

“Yes, but it is …” he pauses. He takes a breath and laughs, looking for the right way to respond.

“Yes. It is not correct,” he says. “It is not correct.”

***

The man who gets the bulk of the credit for discovering Ebola is Dr. Peter Piot. At the time, he was a young microbiologist at the Institute for Tropical Medicine in Belgium. He was the one to receive the blood samples sent by Muyembe.

He describes his experience in No Time to Lose, a book about his professional life, including his vast work on HIV.

But Ebola was his big break. In the book, he describes how vials of blood had arrived in melting ice, some of them broken.

He describes how the World Health Organization ordered them to give up the samples, to send them to England and eventually the Centers for Disease Control and Prevention in the United States, which was one of the only labs equipped to handle a deadly virus like Ebola.

He describes how angry that made him and Dr. Stefaan Pattyn, the man running the lab at the time, who died in 2008.

“[Pattyn] claimed that we needed a few more days to ready it for transport,” Piot wrote. “So we kept a few tubes of VERO cells, as well as some of the newborn mice, which were dying. Perhaps it was a stubborn rebellion against the whole Belgian history of constantly being forced to grovel to a greater power. That material was just too valuable, too glorious to let it go.”

Almost simultaneously, scientists at the CDC and Piot looked at the samples under an electron microscope and saw a snakelike filament — huge in comparison to other viruses and very similar to the Marburg virus. The CDC, which kept the world’s reference lab for hemorrhagic viruses, confirmed this was something new. This was Ebola.

***

The Congo National Institute for Biomedical Research sits in the middle of Kinshasa.

There are ragged couches along the corridors and goats feeding in the courtyard. But this is where the bulk of the science is being done on the second largest Ebola outbreak in history.

Tucked in corners around the building, there are high-tech labs. Scientists in full biohazard suits run Ebola samples through sophisticated machines that spit out DNA sequences. On the bulletin boards outside the offices, scientists have pinned papers published in international journals about the science done right here.

Workers are constantly dragging in boxes of brand-new scientific gear. On this day, almost all of them are stamped with the American flag.

It’s no secret there is resentment among scientists here about what many believe is a marginalization of their work by the West.

Joel Lamika, who runs an Ebola smartphone app at the institute, says many foreign governments want to stamp their flags on the work Congolese have done.

“They want to claim like it’s theirs,” he says. “But it is theft.”

Lamika says perhaps one good thing that has come out of this latest Ebola outbreak is that it is giving the world a chance to rewrite history.

Muyembe, he says, is a national hero. His picture is on a huge banner in front of this institute. During previous Ebola outbreaks, and especially the huge one in West Africa that killed more than 11,000 people, the the scientific community used Muyembe as an example of someone who had gotten it right. Under his leadership, Congo had managed to quickly quell nine previous outbreaks.

Maybe this outbreak, he says, will give the world an opportunity to know who Muyembe is.

“It’s time for the world to learn that Ebola was discovered by a Congolese,” he said. “By Dr. Jean-Jacques Muyembe.”

***

Today, Peter Piot is the director of the prestigious London School of Hygiene and Tropical Medicine. He’s friends with Muyembe and expresses nothing but admiration for not only his scientific prowess, but the way he has managed public health emergencies.

But in his book, he mentions Muyembe only in passing, as a bright scientist constantly pressuring Piot for more resources.

When asked if he feels responsible for writing Muyembe out of history, Piot pauses.

“I think that’s a fair comment,” he says. “But my book was not an attempt to write the history of Ebola, but more my personal experience.”

Piot says at the time of that first Ebola outbreak, African scientists were simply excluded. White scientists — with a colonial mentality — parachuted in, took samples, wrote papers that were published in the West and took all of the credit.

But things are changing, he says. Muyembe, for example, is finally starting to get his due. He was recently given a patent for pioneering the first treatment for Ebola and he has received several international awards, including the Royal Society Africa Prize and, just this year, the Hideyo Noguchi Africa Prize.

“That reflects, I think, the [change in] power relations in global health and science in general,” he said.

During this outbreak, Muyembe has also made a decision many thought unthinkable even a few years ago. He decided that all of the blood samples collected during this Ebola epidemic will stay in Congo. Anyone who wants to study this outbreak will have to come to his institute.

American scientists, who have led the way in studying Ebola, have privately expressed frustrations. But Piot says the decision was obviously made because of how African scientists have been treated. Western scientists, he says, should get over it.

“We have to wake up to two things,” he says. “One, the world has changed. And two, it’s a matter of fairness.”

***

Muyembe keeps his office ice cold, and when he talks, he nervously drums a pen against his notebook. He’s terribly serious about his work, but he also offers an easy smile as he remembers his work.

The thing that makes him glow is talking about the treatment he developed.

“It is the most important achievement of my life,” he says.

In 1995, during another outbreak, he wondered whether antibodies developed by Ebola survivors could be siphoned from their blood and used to treat new cases. So he injected Ebola patients with the blood of survivors, taking inspiration from a practice used before sophisticated advances in vaccine-making.

“We did eight patients and seven survived,” he says.

The medical establishment wrote him off. He didn’t have a control group, they told him. But Muyembe knew that in this village, Ebola was killing 81% of people. Just this year, however, that science became the foundation of what is now proven to be the first effective treatment against Ebola, saving about 70% of patients.

“But if this idea was accepted by scientists, we [could have] saved a lot of people, a lot of lives,” he says.

You can tell Muyembe is hurt by all this. Ever since he returned to Congo, he has fought for recognition for his country. His whole life, he has dreamed that big science could come out of his home country.

Just as he announced that samples would not leave Congo, he also got a commitment from Japan to build a state-of-the-art research facility right here. Soon, the goats in the courtyard will be gone, replaced by a facility just as good as those in Belgium or in the United States.

At 77, Muyembe says he doesn’t regret coming back to Congo. And, unlike when he returned in 1973, now he has equipment.

“Now I have mice here,” he says, laughing. “I have mice. I have subculture. Now, everything is here.”

His biggest legacy, he says, won’t be that he helped to discover Ebola or a cure for it. It’ll be that if another young Congolese scientist finds himself with an interesting blood sample, he’ll be able to investigate it right here in Congo.

Let’s block ads! (Why?)

People on Medicaid who work rural seasonal jobs in Montana are wondering about the future of their access to health coverage. Montana recently passed a law that, if it gains federal approval and goes into effect as planned in January, would require many Medicaid recipients to prove they work a set number of hours each month.

Kate Clyatt is one of those seasonal workers. She’s 28 and works as a ranch hand in the unincorporated community of Helmville, Mont., where there’s a saloon, rodeo grounds, two churches, a K-8 public school and a post office. In the sweeping ranchland surrounded by mountains, there are also a lot of cows.

On a typical morning, Clyatt is moving cattle — coiling up an electric fence on a spool and whistling to encourage the herd to move along.

She wears a snap-collared flannel shirt tucked into bluejeans, and a sweat-stained cap that keeps the sun from her eyes. She also wears a brace on her right wrist — support for an injury she got when she rolled a four-wheeler a couple weeks earlier.

Clyatt explains that she stayed on her parents’ health care plan until she was 26, as allowed by the Affordable Care Act. Then, when she aged out, she signed up for Montana’s expanded Medicaid program.

“Ranching is just not a job with a lot of money in it,” Clyatt says. “I don’t know at what point I’m going to be able to get off of Medicaid.” To qualify for Montana Medicaid, a program jointly funded by the state and the federal government, individual adults must make no more than around $17,000 dollars a year.

Herding cattle is a hard way to make a living, Clyatt says. But, like a lot of Montanans, she loves working outside.

“There’s a lot of seasonal work in our parks,” Clyatt says, “in our forest systems, guiding — bringing income into this state. I mean, there is just a lot of seasonality to a lot of the quintessentially Montana jobs.” Such work and income may ebb and flow, but the need for medical coverage doesn’t.

Clyatt doesn’t keep track of her work hours; she gets paid by the month. And she’s unclear how that might fit into Montana’s new law that says certain Medicaid enrollees need to prove they work or do other “community engagement activities” for at least 80 hours a month to receive care.

Those required “community engagement activities” can also include vocational education, substance use disorder treatment and community service, among other options.

A part of Montana’s new law does attempt to carve out exemptions for workers in seasonal jobs, but the state health department is still developing what that will look like.

Those who don’t meet the exemptions will have to report their compliance with the requirements. For rural workers like Clyatt, that constant reporting could be difficult — she only gets cell service at the stop sign on the edge of town.

When work and reporting requirements went into place in Arkansas last year, 18,000 people lost health coverage. Arkansas, Kentucky and New Hampshire all have seen their “work requirement laws” blocked this year, as a federal judge raised questions about what the policy could mean in terms of a potential loss of health care coverage.

Backers of the work requirements in Montana say a legal fight may also challenge the policy, which narrowly passed in the state’s 2019 legislative session. But until that happens, or the Supreme Court takes up one of the other state’s cases, Montana will keep rolling out its plan.

Heather O’Loughlin, with the Montana Budget and Policy Center, an organization that advocates for social services for people who have low incomes, says health coverage losses like those experienced in Arkansas are expected in Montana too.

“There are going to be a number of enrollees that will be subject to these requirements,” O’Loughlin says. “And what we’ve seen in other states — Arkansas in particular — is that the vast majority of those that are subject to the requirements … often have challenges in reporting their hours.”

After Montana state health department officials watched around 17,000 people in New Hampshire fail to comply with that state’s policy, Montana increased its estimate of how many residents it expects its own new law to impact.

State officials now project 4-12% of current Medicaid enrollees will be affected: They will either fail to meet the work requirements in the law, or won’t comply with the monthly reporting process regarding their work hours and status. That means up to 12,000 people could lose health coverage in Montana. (Like most adults on Medicaid across the U.S., the majority of enrollees in Montana are already working.)

The work-requirements policy passed the Montana legislature with unanimous support from Democrats and in May was signed by Gov. Steve Bullock — also a Democrat, who is now running for president on his track record of political wins in a state that leans conservative.

The policy was a political compromise. Medicaid expansion in Montana was due to expire this summer, and Republicans refused to renew it without a work requirement. Even now, conservative leaders in the statehouse say the bill that passed didn’t go far enough and the work requirements are weak.

But Republican state Rep. Ed Buttrey, who helped push the “work requirements” bill into law, disagrees. He expects some people will lose health coverage, but says the requirements are not meant to be punitive.

“We never set a number of people to try to purposely disenroll,” Buttrey says. “We wanted to find out how many people are truly able-bodied and not working — who should be doing more to benefit themselves and their family, but weren’t.”

The Trump administration, which encourages states to add work requirements to Medicaid, claims such policies could improve health outcomes and get people out of poverty.

Montana submitted its workforce requirement proposal to the federal government at the end of August. According to the program’s timeline, the requirements would start in January 2020, if approved by the Trump administration.

Let’s block ads! (Why?)

It’s the season to roll up your sleeves, gather your documents, and pick a health insurance plan for 2020. For those shopping for their own plans, HealthCare.gov and the other state exchanges are open for enrollment as of November 1.

Despite the rhetoric about the implosion of the Affordable Care Act, the individual mandate going away, and other attempts to hobble the law, the marketplaces are still alive and well. And many people are eligible for subsidies to bring their costs down.

In fact, HealthCare.gov has gotten sleeker and easier to use over the years (after a famously rocky start). There are new bells and whistles to make shopping for a plan easier this year. Still, figuring out how to balance premiums, deductibles and other costs, and choose a plan that will fit your needs for the coming year is hard.

Charlene Wong knows this from experience. Even as a doctor and academic at Duke University who studies how people make health insurance choices, a few years ago, she and her husband picked the wrong plan.

“We spent several days researching plans and called around to make sure the doctors we wanted to see were in network,” she says. Then she got pregnant, and found that while her OB was in network, there was a catch.

“There was a tiered network within that health insurance plan and [my OB] was in Tier 3 of network providers,” she explains. Even though she thought she’d done everything right, she ended up having to switch doctors to keep her costs down.

So take heart — health insurance can be tricky, even for the experts. Here are a few tips to help you find the right plan.

1 – Figure out where and when you need to enroll

Depending where you live, you can either use the federal exchanges on HealthCare.gov or your state’s marketplace to shop for insurance. Twelve states and the District of Columbia run their own exchanges. The federal exchange open enrollment runs until mid-December, but you might have more time if you live in a state that runs its own marketplace.

2 – Review plan options, even if you like your current one

For people who are already enrolled in an ACA plan, Charles Gaba says it’s really important to log in and check if there’s a better value, even if you’re happy with your current plan. Gaba runs the website ACAsignups.net, where he does health care data and policy analysis, focused primarily on the Affordable Care Act.

It can be tempting to skip the whole enrollment rigmarole, especially since you’ll just get rolled into the same plan or a similar plan if you do nothing during open enrollment.

“A lot of people think that because nothing changed in their lives — like, their income is the same, the same household — nothing will change for their policy or their premiums, and that’s just not true,” Gaba says.

Every year, there can be all sorts of changes that affect the kinds of plans available and the costs of those plans. For instance, this year new insurers have entered the marketplace, and premiums have gone down in some states. It’s always worth logging in and checking to see what’s changed for you and whether it makes sense to switch things up.

3 – Compare estimated yearly costs, not just monthly premiums

It’s easy to focus on the monthly premium payment when comparing plans, but Wong at Duke says don’t forget to consider other costs as well.

“A lot of people — we know from past research — become overly focused on the monthly premium and may not pay as much attention to things like the deductible or how much the co-payments are,” Wong says.

The premium price is prominently featured when you’re looking at plans, but look at other costs too. A tool available on HealthCare.gov and some state marketplaces will calculate “estimated total yearly costs” for you. This takes into account the plan’s deductible — how much you have to pay out-of-pocket for covered services before your insurance picks up the tab — and copays, put together with how much health care you expect to use in the coming year.

Wong says that yearly cost estimate can be a really useful tool when picking a plan. “Trying to figure out that math can be a little bit tricky, especially for people who are not as familiar with health insurance.” she says.

4 – Consider how much health care you use

Picking the right insurance plan involves guesswork about how many health issues you’re likely to face in the coming year, which could affect the way costs break down. Your age is usually a useful proxy for this, but there’s always a lot of unknowns, like a surprise cancer diagnosis or a car accident.

Wong points out there are basic tradeoffs to consider. “You might want to think about, ‘Do I pay a little bit more each month in a monthly premium knowing that that would mean less out-of-pocket expenses when and if I do need more medical care?” she says. “Versus — the other way around — ‘Let me pay a lower monthly premium because I don’t really anticipate needing much care, but I know I’d have this health insurance in case something really catastrophic happens.’ “

Alongside these unknowns, leverage what you do know about your health needs. If you have a doctor you like, or if you know you’re going to take a certain prescription drug, look for a plan that covers them. HealthCare.gov allows you to add your provider and your prescription drugs as you browse plans to see whether they’re covered. Another way to find out is simply call your doctors and ask what plans they accept, says Wong.

5 – Beware too-good-to-be-true plans

If you see a good deal online, make sure you’re looking at an ACA plan, warns health policy writer and insurance broker Louise Norris. When you search for health insurance on the internet, you may stumble on short term plans that advertise much lower monthly premiums, but don’t cover the ACA’s famous ten essential benefits. These include some pretty important stuff like prenatal care and mental health treatment.

Sometimes people can find good deals on premiums in the federal and state marketplaces, Norris says, but if one plan sticks out as being too good to be true, read the fine print.

“I did see some new plans popping up in some areas for 2020 where they’ll say $0 deductible,” she says. “Then you scroll down a little bit further and you have maybe $1,000 a day copay for hospitalization.” You hope you won’t spend a lot of time in the hospital, but if you do, that kind of cost could really add up.

Norris points out a new tool this year to help sort out good plans from bad — a star rating, similar to what consumers are used to on Yelp or Amazon (hearkening back to Obama’s original vision). The star ratings are based on information insurers submitted regarding cost, combined with enrollee feedback.

“Star ratings are one of those at-a-glance things where you can kind of see, “OK, how do other customers feel about this plan?’ ” Norris says. Not all plans have them since some are new, she says, but for plans that do, the stars “give you some some red flags if maybe there are some concerns.”

6 – Get free help from the pros

The Trump administration slashed federal funding for advertising open enrollment and the navigator program, but those programs do still exist: There are still people across the country trained and ready to sign people up — for free.

“My best piece of advice for people — particularly those who are less familiar with insurance, is to see if you can get some help,” Wong says. You can call for help, but she recommends trying to meet in person with “a health insurance navigator or a certified application counselor,” she says. “Importantly, these are folks who are impartial to which health insurance plan may be best for you.”

Katie Turner is one of those trained navigators — she’s been signing people up for seven years, and works with the Family Health Care Foundation in the Tampa Bay, Fla., area. Leading up to open enrollment, she’s been busy calling consumers from past years, letting them know that this is the time.

She advises people to assemble all the necessary documents, such as Social Security cards, immigration documentation, tax returns, before going into a meeting with a navigator.

Most of all, she says, don’t miss your chance to sign up for coverage if you need it.

“There is a lot of confusion out there,” Turner says. Many people are confused about what a legal challenge to the law means for the marketplaces (nothing for now), when open enrollment is, and more. “All we can do,” Turner says, “is continue to be here and provide the resources that we’ve been providing for the last seven years to help people enroll in coverage.”

Let’s block ads! (Why?)

Fern Brown, 81, sat in the rear of a tent on the windswept fairgrounds of the historic Gold Rush town of Auburn, Calif., this week, drawing deep breaths through the mouthpiece of a nebulizer plugged into a power strip atop a plastic folding table.

Afflicted for years with asthma and chronic obstructive pulmonary disease, Brown uses the nebulizer twice a day to avoid flare-ups that can be life-threatening. It turns her medicine into a fine mist that she can inhale.

Her machine runs on electricity, and when Pacific Gas & Electric Co. shuts off the power in the region amid wildfire scares, as it did earlier this week, Brown must scramble to find a place where she can administer her treatment.

She knows the makeshift “resource center” she visited on Tuesday afternoon, one of several set up by PG&E, is not a viable long-term fix ? especially now that this month’s power outages and the uncertainty that comes with them seem likely to be a more frequent feature of California’s fall fire season.

“I could rent a generator. Or can you rent to own?” Brown asked. “They’re expensive. But that’s probably what I’ll do. We just want to be ready for the next time.”

“That is the real travesty of this PG&E plan,” said Sandy Jay, a nurse practitioner at Santa Rosa Memorial Hospital in Sonoma County, about 130 miles southwest of Auburn. “As the dominoes fall, it’s the poor and the disabled who are the most affected by this.”

Jay supervises a program that for 20 years has sent teams of workers throughout the Santa Rosa area to bring medicine and treatment to those whose conditions prevent them from leaving home or keep them bedbound.

Without power, though, almost all of those patients need help immediately, she said. Air-pumped mattresses, used to prevent chronic bedsores, begin to deflate. Ventilators and nebulizers cease to function. Electric wheelchairs don’t respond. And many of the affected people are reachable only by landline telephones, which aren’t all reliable when the power’s out.

“It’s just kind of unconscionable,” Jay said.

Hardened by experience of shut-offs imposed by their utility company, many residents of this region ? and others up and down the state ? have concluded they must prepare for future power cuts.

PG&E confirmed that notion in an emailed statement, saying all its customers should “have an emergency plan to be prepared for any extended outages due to extreme weather or natural disasters.” Extended outages, even planned ones, can mean up to a week without electricity, Californians in some areas have been dismayed to discover.

PG&E’s statement referred customers to the utility’s website page on wildfire safety, adding that local county emergency offices may also offer help.

The PG&E outages that have affected some 1.8 million Californians in the past few weeks, amid nerve-wracking warnings of wind and fire, have only affirmed the company’s message.

For those with home medical needs, the quest for a durable fix has taken on real urgency.

Steve Bast, who lives in a rural section of Auburn in the Sierra foothills, has Type 2 diabetes, and his insulin needs to be refrigerated. Bast has been forced to deal with previous outages, both weather-related and PG&E-driven, some lasting several days.

Now, he said, he keeps ice packs in his freezer and puts them on the insulin containers as soon as his power goes down. He then stores the medication inside a soft cooler that zips closed and goes back in the refrigerator for as long as the unit remains cold.

Bast also uses a CPAP machine for his sleep apnea, and it must be plugged in, so he said his next move is to buy a small, personal generator. He notes however, that he would still need to find an open gas station for fuel to keep the generator running during an outage. Gas stations rely on electricity to run their pumps.

Then there’s the cost: A personal generator sells for between $400 and $1,000, meaning it could be out of reach for people of limited means.

PG&E’s temporary resource centers, of the type Fern Brown visited, are small, tented areas where up to 100 people at a time can power up devices of all kinds and get free bags of ice, cases of water and snacks. The centers are set up when an area is plunged into a utility-ordered shut-off, and they close once power is fully restored to that area.

But such centers cannot solve the bigger problems. During the last power shut-off a few weeks ago, Debrah Vitali went to check on her neighbor, 88-year-old Joan Casper. She and Casper have become close friends in their neighborhood in Santa Rosa, and Vitali knows that Casper wears an emergency calling device around her neck, which she can use to alert medics if she needs help.

The device is tied to Casper’s landline, but what neither woman realized was that the landline operates through her internet connection. When the power went out, so did the internet — and with it Joan’s ability to summon help.

“I couldn’t believe it,” Vitali said. “So we’ve just agreed as a group of neighbors to take turns checking on her, because she’d have no way to let anyone know she was in trouble.”

California’s Health and Human Services Agency this week established an ongoing, nonemergency hotline (833-284-3473) to help residents find health services in their communities during any power shut-off.

Gov. Gavin Newsom, meanwhile, has announced a $75 million fund that state and local government leaders can tap to help purchase generators and other backup energy sources that would keep local emergency services going in their communities.

For people whose medical treatment begins at home, however, the solutions also need to begin there.

At the PG&E center in Auburn, Fern Brown completed her 30-minute treatment before speaking. She said that her asthma and COPD have become worse over the past couple of years and that skipping a nebulizer session is not an option.

Brown and her sister, Lavina Suehead, who cares for Brown, drove a half-hour from their home in the remote town of Foresthill to reach the resource center at Auburn’s Gold Country Fairgrounds. They said they would be seeking another solution, both for Tuesday night’s treatment and beyond.

“We’ll have to do something,” Brown said. “We’re out of power a lot.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. KHN is not affiliated with Kaiser Permanente.

Let’s block ads! (Why?)