“There was actually a study done in Denmark in 2019. The study covered 20 years of electronic record data of the healthcare system. And what we found is that women are diagnosed later than men for 700 conditions and that includes things like diabetes, various cancers, and heart disease,” explained Katherine Folkendt, the founder and CEO of FemTech Insider.

Folkendt moderated an illuminating panel discussion with pioneering entrepreneurs and clinicians developing innovative diagnostic technologies to help close the gender gap in healthcare. The panelists included:

• Caroline Mitterdorfer, co-founder of Flovy Health, which provides clinical decision support software to healthcare providers to improve diagnosis of endocrine disorders in women
• Dr. Frank Hoffmann, founder of Discovering Hands, which trains and employs visually impaired women to provide breast cancer screening using their enhanced sense of touch
• Dr Sara Naseri, co-founder of QVIN, has developed the first FDA-cleared diagnostic menstrual pad to enable convenient screening for cervical cancer and other conditions
• Dr Sofiane Bendifallah, a gynecologic surgeon at the American Hospital of Paris who is working to improve care pathways for women with endometriosis and gynecologic cancers

The panelists discussed the challenges that lead to diagnostic disparities for women and their innovative approaches to overcoming these issues.

“80% of women once in their lifetime, suffer from an endocrine disorder, but it does take years and also very many providers to actually get to the bottom of a diagnosis,” said Mitterdorfer. Her company, Flovy Health, aims to empower gynecologists, primary care doctors, and nurse practitioners with software to improve the detection of often misdiagnosed or undiagnosed endocrine conditions like PCOS.

Dr Hoffmann explained that while mammograms are an important breast cancer screening tool, many women avoid them due to fears about radiation and painful compression. Discovering Hands takes a novel approach, employing blind and visually impaired women to provide comfortable and attentive manual breast exams.

“The tactile sensitivity for detecting tumors, especially the small six to eight-millimeter ones we want to detect, is over 80%,” said Hoffmann. “More importantly, [our examiners] use that time to answer the patients’ questions because nothing is more important than making women realize that early detection means a cure.”

Dr Naseri’s company, QVIN, is taking aim at the global burden of cervical cancer by developing a convenient diagnostic menstrual pad women can use at home. Many women have to take time off work to get a Pap smear at the doctor’s office every few years. During the COVID-19 pandemic, cervical cancer screening rates dropped by 20–30%.

“Menstrual blood contains endometrial tissue and vaginal fluid, so over 400 unique proteins that provide information specifically about the reproductive organs,” explained Naseri. “We’re very excited about being able to screen for cervical cancer very conveniently and affordably using frankly just cotton and paper.”

For Dr Bendifallah, an important part of improving women’s health is greater empathy from the medical system. “All the healthcare systems, especially for women, are based on an old mindset which needs to be changed because the biology and needs of women are not the same as men,” he said. “The first step is to listen to patients and understand what they really need.”

The panelists agreed that overcoming stigma and lack of awareness are key to achieving more timely diagnoses for women’s health conditions. “It is important we detect things early because time is the most important prognostic factor for any condition, whether it’s breast cancer, PCOS or endometriosis,” said Naseri.

Mitterdorfer emphasized the need to incentivize healthcare providers to spend more time with patients for thorough evaluations and patient education. “Women trust their provider and continuously seek guidance, so we need to find ways to incentivize gynecologists and primary care providers to take the time to educate patients,” she said. “At the moment that is not the case. A typical gynecologist has seven minutes per patient visit.”

Hoffmann highlighted the enthusiastic patient response to Discovering Hands’ compassionate care model. Over 97% of patients recommend manual breast exams by their blind examiners to friends and family. “Diagnostic services that are experienced as pleasant lead to acceptance. A measure that evokes unpleasant associations is suppressed,” he explained.

The panelists hoped their innovations would make important strides in women’s health diagnostics and care. However, Naseri pointed out, “Women’s health is behind, and we have some catching up to do…We need to look for where women have an advantage.” She believes the monthly menstrual blood that half the population produces provides an incredible untapped opportunity for diagnostic insights.

In concluding the discussion, the panelists shared some key takeaways:

“If there was one thing I wish people would realize, it’s incentivizing providers,” said Mitterdorfer. “Value-based care, actually giving the provider a slice of the cake if they are treating, healing or bringing down costs by providing better care, has huge potential.”

“I hope that everyone, especially women themselves, realize that effective early detection of breast cancer saves lives,” said Hoffmann. “You can do something for yourself. I hope that will lead women to all the preventive instruments available.”

“It wasn’t until 1990 that women were even included in medical research,” Naseri pointed out. “As a field, women’s health is behind. We believe menstrual blood, that advantage that we’ve been throwing away every month, could be a way to accelerate participation and representation in clinical research and close the gender data gap.”

Dr. Bendifallah emphasized the importance of empathy. “Women need to be listened to. If we have more empathy, this will bring more empathy from our hospitals and doctors to be better,” he said. “And we have to trust technology’s accuracy and use it to do better, higher and faster for this huge topic.”

While much work remains to achieve health equity, the pioneering spirit and tireless efforts of innovators like these panelists provide hope for a future where women’s health is given the priority it deserves. Through novel diagnostic technologies, improved models of care, greater awareness, and medical providers who truly listen to women’s needs, the gender gap in healthcare can eventually become a thing of the past.

The post Mind the gap: Why diagnostic disparities damage women’s health appeared first on Medika Life.

We may be spending too much time singing the praises of the tech and less time exploring how to deploy these channels and resolve long-tolerated problems. We may be overly impressed by their engineering marvel and less centered on democratizing information to tackle health equity disparities. Some health payers and provider systems are using AI to pump the breaks on authorizations when the bigger issue is whether those that need preventive and engaged care gain prompt access. Efficiency without effectiveness limits AI’s great possibilities.

HIMSS leaders are asking these questions. They are tapping into global experts in information management, cybersecurity, patient engagement, upskilling health provider system IT teams, discussing policies with government leaders worldwide and much, much more. If you thought HIMSS was a colossus annual meeting – a party for health IT pros, think again! HIMSS CEO Hal Wolf and his staff are passionate about how information creates informed (and accurate) decisions. Their roles within this global society hold great influence and they understand that with responsibility comes accountability.

I had the opportunity to meet with the HIMSS leadership team for an upcoming feature and conduct a special radio interview for Healthcare Now Radio network on Health Unabashed with the HIMSS CEO. Here’s the preview. My full and candid conversation with Hal and Executive Producer Gregg Masters will air starting Monday, March 11th starting 10AM, three times daily for two weeks.

The post HIMSS 2024 will Feature Prominently in Medika Life Coverage appeared first on Medika Life.

When Selam Solomon Caldwell and her husband learned she was pregnant last year, the stakes for finding the right OB-GYN felt high. Caldwell, a Black woman, had heard stories from family and friends of maternity care providers who ignored their requests or pressured them into cesarean sections without clear medical justification.

As a relative newcomer to Los Angeles, the recruiter, now 31, knew few Black people who could recommend doctors who had treated them with respect. She combed review sites, including Google reviews and Healthgrades, but couldn’t find how nearby physicians and hospitals might treat a Black woman like her.

“It’s hard to tell if it’s a fellow Black person who’s giving the review,” Caldwell said.

Consumer ratings sites rarely identify patient experiences by race or ethnicity and hospitals are under no obligation to reveal the racial and ethnic breakdowns of their patient satisfaction scores. Yet that information could be instrumental in holding maternity care providers and hospitals accountable for treating patients inequitably and could empower expectant mothers like Caldwell in finding quality obstetric care.

“You can’t change what you don’t see,” said Kimberly Seals Allers, founder of Irth, an app allowing Black and brown women to find and leave reviews of maternity care providers. She’s one of a few entrepreneurs developing new tools for collecting feedback from mothers of color.

A steady drip of new research over the past several years has spotlighted racial discrimination by maternity care providers and the role it may play in one of the country’s most vexing health disparities: Black women experience the worst birthing outcomes, a gap not explained by income or education, according to a KFF analysis. In 2021, they were nearly three times as likely to die of pregnancy-related causes as white women.

Mothers of color, especially Black women, report that they do in fact experience discrimination. They are more likely than white women to say that their care providers ignored them, scolded them, or pressured them into treatments they didn’t want. The extent to which discrimination is reported varies widely by survey, but one recently published report by the Centers for Disease Control and Prevention found roughly 30% of Black, Hispanic, and multiracial women reported mistreatment during maternity care, compared with 20% of women overall.

It’s unclear how many hospitals track survey responses by race, and, even if they do, they rarely reveal that information. And the federal government requires generic reporting on how patients say they were treated, making it difficult to pin down and address incidents of bias in maternity care.

Funding and Regulations Lag

Currently, the results of the industry’s standard patient experience survey, known as the Hospital Consumer Assessment of Healthcare Providers and Systems, are made publicly available by the federal government to help patients compare hospitals. They incentivize hospitals to improve care and are included in the rankings of many hospital ratings sites, such as U.S. News & World Report’s Best Hospitals. But it doesn’t ask about maternity care or discrimination and has low response rates, particularly among people of color.

These flaws can also make the survey inadequate for improving birth equity. “We know it’s insufficient,” said Amanda P. Williams, an OB-GYN and clinical innovation adviser to the nonprofit California Maternal Quality Care Collaborative. Hospitals, she said, could fill in the gaps by collecting feedback from maternity care surveys and breaking the results out by race and other demographic information; they could also talk to patients through forums such as town halls or focus groups.

Joy Lewis, senior vice president for health equity strategies at the American Hospital Association, said many hospitals do this work, both generally and in obstetrics.

However, Williams believes it isn’t happening enough in maternity care.

She said there are some pockets where people are doing these activities but that they are not yet widespread. At a national conference of 200 hospital executives this year, Williams said, only a few raised their hands when asked if they break out their maternity outcomes data. “If your overall C-section rate is fine, you might think everything’s hunky-dory,” she said. “But if you see that your Black people are having 50% higher C-section rates than your white and Asian patients, there’s very important work to be done.”

Then there are barriers to participation. Studies have found many in the Black community distrust the health care system.

Fearing retaliation and being seen as an “angry Black woman,” Ta-She-Ra Manning, a maternal health program coordinator in Fresno, California, said she didn’t provide any critical feedback when her OB-GYN dismissed her concerns about unusual symptoms during her 2021 pregnancy.

Meanwhile, new funding to measure disparities has been slow in coming. President Biden’s 2023 budget proposed $7.4 million to develop a supplemental survey aimed at reducing maternal health disparities, among other steps. But Congress did not fund the item. Instead, an agency in the Department of Health and Human Services is developing it with its own funding and estimates the work will take less than five years, according to a statement from Caren Ginsberg, who directs the agency’s surveys.

Still, the public likely won’t see changes anytime soon. After a survey’s measures are created, it can take several years for the results to be publicly reported or tied to payment, said Carol Sakala, senior director for maternal health at the National Partnership for Women & Families, an advocacy organization.

“This molasses level of movement contrasts acutely with all the things hitting the news about people not getting the right care and attention and respect,” Sakala said.

Amid growing interest in health equity, traditional ratings sites are grappling with how much to share with the public. For its birthing hospital ratings, U.S. News & World Report recently started assessing whether hospitals tracked racial disparities in maternity outcomes measures, but it withholds actual results. Healthgrades is taking time to think through how to collect and display sensitive information publicly, said spokesperson Sarah Javors in a statement.

Black Innovators Fight for Better Data

Some Black women are trying to fill the void by creating new feedback mechanisms that could be more trusted by the community. Allers said she created Irth after a traumatic birth experience as a Black mother at a highly rated hospital left her feeling failed by mainstream ratings. On the app, verified users answer questions, from whether they felt respected by their doctor to if they experienced certain types of mistreatment such as dismissal of pain. Irth currently has 10,000 reviews of hospitals, OB-GYNs, and pediatricians nationally, according to Allers.

“Our data is for the community,” said Allers. “They know their feedback has value to another mom or family.”

Irth also offers analysis of the reviews to hospitals and leads campaigns to collect more reviews for them. But Allers said many hospitals have expressed little interest.

Karen Scott, an OB-GYN who created PREM-OB, a scientifically validated survey that measures racism in Black birthing experiences, said she has met hospital leaders who don’t think their providers could mistreat patients or who worry that documenting responses could carry legal risk.

The American Hospital Association’s Lewis declined to comment specifically on Irth and PREM-OB but acknowledged the Black community’s long-standing mistrust of health care providers. She said hospitals want to hear more from patients in historically marginalized groups.

Early signs of progress are emerging in parts of the country.

California hospitals will likely report disparities in birth outcomes and patient satisfaction measures. Hospitals are expected to start posting data broken out by race and other demographics on their websites in 2026, though the state hasn’t finalized the measures that will be required, said Andrew DiLuccia, a spokesperson for the state’s health data agency. At least two states, Washington and New Jersey, have disclosed rates of C-sections among low-risk patients by race for individual hospitals.

Scott founded Birthing Cultural Rigor to increase uptake of her survey. The firm has partnered with birth equity groups to recruit respondents in select counties in Georgia, Michigan, Ohio, and Tennessee. Scott said results will be used to train local health professionals on how to reduce racism in maternity care.

Separately, Irth will collect and analyze reviews for three hospitals or health systems in California, said Allers. One of them, MemorialCare Miller Children’s and Women’s Hospital Long Beach, will work with Irth to better understand the impact of birth equity efforts such as implicit bias training.

“We’ll get to see if what we’re doing is actually working,” said Sharilyn Kelly, executive director of the hospital’s perinatal services.

Caldwell, the recruiter, eventually found a doctor she trusted and went on to have a smooth pregnancy and delivery. Her son is now 8 months old. But with so little information available on how she might be treated, she said, she felt anxious until she met her doctor, when “a lot of that stress and anxiety melted away.”

Digital strategy & audience engagement editor Chaseedaw Giles contributed to this report.

[Editor’s note: California Healthline is an editorially independent service of the California Health Care Foundation, which has contributed funding to PREM-OB and the birth equity nonprofit Narrative Nation, which developed Irth.]

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

The post Mothers of Color Can’t See if Providers Have a History of Mistreatment. Why Not? appeared first on Medika Life.

FALLON, Nev. — Linda Noneo turned up the heat in her van to ward off the early-morning chill that persists in northern Nevada’s high desert even in late June. As the first rays of daylight broke over a Christian cross on the top of a hill near the Fallon Paiute-Shoshone colony, she drove toward her first stop to pick up fellow tribal members waiting for transportation to their medical appointments.

Noneo is one of four community health representatives for the Fallon Paiute-Shoshone, which the tribe said includes about 1,160 enrolled members. The role primarily involves driving tribal members to their health appointments, whether in Fallon, a city of just under 10,000, or Reno, more than 60 miles west. Noneo said she and her colleagues have also taken patients as far away as Sacramento, California, and Salt Lake City, round trips of nearly 400 and 1,000 miles, respectively.

Public health experts contend the role Noneo and others like her fill is an integral part of ensuring people receive the care they need, especially for chronic illnesses, by helping close gaps in areas with medical provider shortages. Besides transporting patients to their appointments, community health representatives provide health education, patient advocacy, and more. Noneo said she and her colleagues spend a lot of time helping young mothers and elders, checking on the latter, taking them to get groceries, or delivering their medication.

Yet, most state Medicaid programs don’t recognize or pay for services offered by health workers, such as Noneo, who work on tribal lands. That’s despite their work being essentially the same as that of “community health workers” in nontribal communities, a classification many state Medicaid programs cover.

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In Nevada, that disparity recently changed when the state began allowing workers on tribal lands to qualify for Medicaid reimbursement as community health workers. Tribal leaders say the Medicaid payments supplement existing personnel funding by covering the individual services the workers provide. That in turn should allow tribes to train and hire more community health representatives, which could expand health and support services for tribal members.

Only two other states, South Dakota and Arizona, treat community health representatives serving Native American populations as eligible for the same Medicaid reimbursement as their similarly named counterparts in nontribal areas, according to Michelle Archuleta, a community health representative program consultant for the federal Indian Health Service. However, she said, the tribes the CHRs work for have not begun billing the states’ Medicaid programs.

The Community Health Representative program, established by Congress in 1968, is among the nation’s oldest community health workforces. It’s jointly funded by each tribe and the IHS, an agency within the Department of Health and Human Services responsible for providing health care to members of federally recognized tribes. As of 2019, more than 1,600 of these tribal linchpins worked in the United States, according to the IHS.

Last year, the Centers for Medicare & Medicaid Services approved Nevada’s plan to make community health workers who complete training and certification requirements eligible for Medicaid reimbursement when they assist with chronic disease management and prevention.

And in December, leaders with the Nevada Community Health Worker Association helped tribes make sure their community health representatives would receive the necessary training for certification. The association would “fully support” tribal clinics submitting their community health representative training for recognition in the state and it would not require a change to state law, said Jay Kolbet-Clausell, program director for the group. For now, community health representatives are receiving double training to be able to file for Medicaid reimbursement.

Training and certification requirements for community health workers vary widely by state and employer, as workers are often hired by hospitals, local organizations, health departments, or federally qualified health centers. But a movement has been emerging across the country to bring more uniformity to those requirements and formalize the roles, said Sweta Haldar, a policy analyst with the Racial Equity and Health Policy program at KFF.

As part of this process, states are expanding coverage for community health workers under Medicaid. According to a brief Haldar co-authored, 28 of 47 states, and Washington, D.C., reported having policies that allow Medicaid reimbursement for services provided by community health workers. Arkansas, Georgia, and Hawaii did not respond to KFF’s survey.

“There’s a really robust evidence base that is growing every day that community health worker interventions can be effective in reducing health disparities, particularly in communities of color,” Haldar said.

Studies have also shown that community health worker programs are effective in improving health outcomes for people with chronic conditions and that they reduce health care costs.

Soon after Nevada implemented its program, about 50 community health representatives completed the requirements. Another cohort of 20 finished the curriculum later, said Kolbet-Clausell. The goal is for those who have completed the recent training to help their peers through it, they said.

Even before the tribal workers were included in the community health workforce, one of its greatest strengths was its diversity, Kolbet-Clausell said. In Nevada, the 2022 student group was made up of greater shares of people who are American Indian or Alaska Native, Hawaiian or Pacific Islander, Black, Hispanic, or from rural areas than the state’s general population. They said it’s likely one of the most diverse health programs in the state.

Community health representatives such as Noneo are typically tribal or community members themselves, which, public health experts say, allows them to connect more easily with the patients they serve and better connect them to health care.

For example, the first person she picked up that June morning was her cousin, who had a 6 a.m. dialysis appointment.

Kolbet-Clausell said they’re optimistic about the growing workforce and the support it’s getting from state leaders.

“Five, six years ago, there was a lot more resistance,” they said, because lawmakers saw the efforts to expand the community health workforce as simply spending more money. “But this actually just benefits rural communities as much as it benefits underserved urban communities. It serves everyone.”

Back in Fallon, Noneo reflected on her 27 years as a community health representative for her tribe as she prepares to retire in September. She has been there with her fellow tribal members through important and hard times in their lives — like driving an expectant mother to Reno to deliver a baby, taking people to receive treatment for mental health crises and addiction, and bringing patients to their dialysis treatments on her week off around Christmas so they wouldn’t miss their appointments.

The most challenging part of the job, she said, is experiencing the loss of someone she has regularly seen and provided years of services for.

“We all have compassion,” she said. “In this kind of job, you have to have that.”

After decades of shuttling patients, Noneo has the work down to a steady and familiar rhythm. Four hours after dropping off her cousin for dialysis, Noneo picked her up at the clinic as she dropped off the next dialysis patient. On a clipboard, she logged the hours and mileage for each appointment.

The post Tribal Health Workers Aren’t Paid Like Their Peers. See Why Nevada Changed That appeared first on Medika Life.

Because so many Black people die young — with many years of life ahead of them — their higher mortality rate from 1999 to 2020 resulted in a cumulative loss of more than 80 million years of life compared with the white population, the study showed.

Although the nation made progress in closing the gap between white and Black mortality rates from 1999 to 2011, that advance stalled from 2011 to 2019. In 2020, the enormous number of deaths from covid-19 — which hit Black Americans particularly hard — erased two decades of progress.

Authors of the study describe it as a call to action to improve the health of Black Americans, whose early deaths are fueled by higher rates of heart disease, cancer, and infant mortality.

“The study is hugely important for about 1.63 million reasons,” said Herman Taylor, an author of the study and director of the cardiovascular research institute at the Morehouse School of Medicine.

“Real lives are being lost. Real families are missing parents and grandparents,” Taylor said. “Babies and their mothers are dying. We have been screaming this message for decades.”

High mortality rates among Black people have less to do with genetics than with the country’s long history of discrimination, which has undermined educational, housing, and job opportunities for generations of Black people, said Clyde Yancy, an author of the study and chief of cardiology at Northwestern University’s Feinberg School of Medicine.

Black neighborhoods that were redlined in the 1930s — designated too “high risk” for mortgages and other investments — remain poorer and sicker today, Yancy said. Formerly redlined ZIP codes also had higher rates of covid infection and death. “It’s very clear that we have an uneven distribution of health,” Yancy said. “We’re talking about the freedom to be healthy.”

A companion study estimates that racial and ethnic inequities cost the U.S. at least $421 billion in 2018, based on medical expenses, lost productivity, and premature death.

In 2021, non-Hispanic white Americans had a life expectancy at birth of 76 years, while non-Hispanic Black Americans could expect to live only to 71. Much of that disparity is explained by the fact that non-Hispanic Black newborns are 2½ times as likely to die before their 1st birthdays as non-Hispanic whites. Non-Hispanic Black mothers are more than 3 times as likely as non-Hispanic white mothers to die from a pregnancy-related complication. (Hispanic people can be of any race or combination of races.)

Racial disparities in health are so entrenched that even education and wealth don’t fully erase them, said Tonia Branche, a neonatal-perinatal medicine fellow at Lurie Children’s Hospital of Chicago who was not involved in the JAMA study.

Black women with a college degree are more likely to die from pregnancy complications than white women without a high school diploma. Although researchers can’t fully explain this disparity, Branche said it’s possible that stress, including from systemic racism, takes a greater toll on the health of Black mothers than previously recognized.

Death creates ripples of grief throughout communities. Research has found that every death leaves an average of nine people in mourning.

Black people shoulder a great burden of grief, which can undermine their mental and physical health, said Khaliah Johnson, chief of pediatric palliative care at Children’s Healthcare of Atlanta. Given the high mortality rates throughout the life span, Black people are more likely than white people to be grieving the death of a close family member at any point in their lives.

“We as Black people all have some legacy of unjust, unwarranted loss and death that compounds with each new loss,” said Johnson, who was not involved with the new study. “It affects not only how we move through the world, but how we live in relationship with others and how we endure future losses.”

Johnson’s parents lost two sons — one who died a few days after birth and another who died as a toddler. In an essay published last year, Johnson recalled, “My parents asked themselves on numerous occasions, ‘Would the outcomes for our sons have been different, might they have received different care and lived, had they not been Black?’”

Johnson said she hopes the new study gives people greater understanding of all that’s lost when Black people die prematurely. “When we lose these lives young, when we lose that potential, that has an impact on all of society,” she said.

And in the Black community, “our pain is real and deep and profound, and it deserves attention and validation,” Johnson said. “It often feels like people just pass it over, telling you to stop complaining. But the expectation can’t be that we just endure these things and bounce back.”

Teleah Scott-Moore said she struggles with the death of her 16-year-old son, Timothy, an athlete who hoped to attend Boston College and study sports medicine. He died of sudden cardiac arrest in 2011, a rare condition that kills about 100 young athletes a year. Research shows that an underlying heart condition that can lead to sudden cardiac death, hypertrophic cardiomyopathy, often goes unrecognized in Black patients.

Scott-Moore still wonders if she should have recognized warning signs. She also has blamed herself for failing to protect her two younger sons, who found Timothy’s body after he collapsed.

At times, Scott-Moore said, she wanted to give up.

Instead, she said, the family created a foundation to promote education and health screenings to prevent such deaths. She hears from families all over the world, and supporting them has helped heal her pain.

“My grief comes back in waves, it comes back when I least expect it,” said Scott-Moore, of Baltimore County, Maryland. “Life goes on, but it’s a pain that never goes away.”

The post Study Reveals Staggering Toll of Being Black in America: 1.6M Excess Deaths Over 22 Years appeared first on Medika Life.

The current clinical trial landscape

In 2020, 41% of Americans reported not knowing anything about clinical trials or their potential as a treatment option. That’s a huge percentage of the U.S. population that isn’t participating in research that could help them address serious health issues they’re facing. To correct this, we need an ecosystem-wide effort aimed at building awareness for patients, their advocates, and physicians.

Essential to this effort is a concerted, intentional approach to increase clinical trial access for communities historically underrepresented in clinical research. While there are currently 24,602 clinical trials recruiting participants in the U.S., 50% of FDA trials are conducted in only 1-2% of zip codes in the U.S., which means that millions of patients are shut out of research based solely on their geographic location or socioeconomic status. This primarily impacts people of color and those living in rural communities.

Benefits of clinical trials

It’s a status quo begging to be reimagined. Drugs can have a different effect on patients depending on their race and ethnicity, which emphasizes the importance of increasing diversity in trial participants to ensure safety and efficacy of therapeutics. And, even though every American who has taken over-the-counter or prescription medications has benefitted from a clinical trial, only 8.9% of us report being asked to participate in one.

Beyond the benefits to drug development, participation in clinical trials can provide participants with important advantages too. Patients can gain access to new treatments before they become widely available. They also receive regular, careful medical attention from physicians and other care professionals on the trial’s research team.

For some patients, participation can result in cures; one recently reported trial that evaluated a colorectal cancer treatment remarkably led to remission for every patient involved. Other recent trials have helped shrink tumors for patients with bile duct cancer and provided relief for those dealing with chronic depression. But clinical research provides no benefits if patients don’t know about them – and before we solve the participation challenge, we have to solve the awareness challenge.

Building networks has far-reaching effects

To raise awareness of clinical trials and encourage involvement, we must start by expanding the network of potential clinical trial sites and physicians who administer them. Too often, the community health centers that serve over 30 million Americans – including many members of the underrepresented groups that biopharma companies are seeking to reach and include – are simply left out of the equation.

A positive step forward would be to build up a new, expansive and inclusive network of trial sites and clinical trial investigators who can more effectively bring clinical research as a care option to their patients and communities. No one company can do this alone, but, as an industry working collectively, this is an achievable goal.

Additionally, digital technologies can be used to identify and provide information on clinical trials to people with particular diseases who may benefit most from trial participation, regardless of location. These technologies can also be leveraged to assist in communication throughout the trial process in order to enhance site design and patient experience, helping to boost engagement and prevent dropouts.  

Too many Americans don’t know enough about clinical trials to evaluate and choose participation, but we can take steps to solve that problem. We can work together across disciplines to identify and create sites in underrepresented communities, involve new physicians more directly to reach patients and encourage their involvement, and seek patient engagement and feedback throughout the trial process to enhance their experience and encourage future participation more effectively.

By empowering new communities to join in on clinical research, we can reach more patients to offer clinical research as a care option – and at the same time, enlist their help in creating more effective, safer medicines for those who will need them to live longer, healthier lives.

The post Clinical Trials As a Care Option – the Time is Now appeared first on Medika Life.

Social Security adjudicators working on applications for benefits have licensed professionals to evaluate the case and rate them regarding the person’s ability to perform any work. Physicians and licensed psychologists never see the applicants, only the information in the file.

Applicants that can’t lift at least 5 lbs. for a specific length of time may still be seen as able to do sedentary work, and here’s where the cards are stacked against them.

The Dictionary of Occupational titles, last updated in 1977, lists over 12,700 jobs many available for unskilled, sedentary workers at that time. Among the jobs are shoe sole gluer, fish scaler, nut sorter, dowel inspector, and egg processor. Where in the US do we have people gluing soles on shoes or sorting nuts?

A pinball machine repairer is still available, but how would a person with sedentary issues be able to do that? The jobs are still listed as existing here, and adjudicators see that as a valid reason to deny benefits to a disabled person. Shouldn’t the listings be updated? Who’s responsible for that?

Some people receive benefits who can do other than sedentary work and be employed in a variety of jobs. I recall a man that field workers found lying under his truck doing repairs on it. Another man was engaged in a home repair business, a third was pulling a boat trailer, and the list continues.

How do I know about this? I worked as a medical consultant for Disability for over a decade, and I attended meetings where they pointed out recent fraud. Adjudicators told me about the old job listings they were using to deny benefits, and as long as they were in that book, they were used.

Those who knew they didn’t deserve benefits know one thing that protects their fraudulent claims; many states may have only two field inspectors to check up on questionable claims.

How does Disability know about these claimants? It’s simple; someone reported them to Social Security. As far as I know (from my years working there), there are no regular visits to check up on those receiving benefits. A paper trail tracks some on a one, three, or never basis according to their assigned disability rating. The last are those seen as rated with no medical improvement expected, such as terminal cancer or, perhaps, another terminal illness that will result in death within one year.

Reports may prompt the inspectors to make a trip out into the field. Nosey or unhappy neighbors and vigilant citizens keen to report fraud are the banes of those who are inappropriately collecting benefits. No reports might mean a cursory trip occasionally to check up on someone. Otherwise, various forensic methods will be used to catch the fraudsters.

Think how many people have been denied because they couldn’t find a fish scaling job. Also, think about the stress, the endless hours of trying to contact someone to help, or the process of giving up in depression. Isn’t it enough that they want to work and can’t? How demeaning is that?

Don’t we determine our self-worth by how we contribute to society or our families? Being pushed aside like this is saying the disabled are worthless, and that’s not as bad as it gets. Some may commit suicide. I don’t have data on that, but it’s not a bad guess on my part.

If you or someone you know has been denied Social Security Disability benefits, you have a right to ask for a reconsideration and a review after that by a judge. Should you not be satisfied with the outcome, contact the local office of your state’s Federal Senator and ask for a “sensitive inquiry” on their part.

You can also contact an attorney who specializes in these cases. Their fee is set by law and determined by how much money (often back benefits) is realized.

The post Ruling Against the Disabled and Denying Social Security Benefits to Them appeared first on Medika Life.

The 25-year-old blogger and college student has autism and several chronic illnesses, and with the support of her grandparents and friends, who help her access a complex network of social services, she lives relatively independently in Johnson City, Tennessee.

“If something happens to them, I’m not certain what would happen to me, especially because I have difficulty with navigating things that require more red tape,” she said.

Johnson said she hasn’t made plans that would ensure she receives the same level of support in the future. She especially worries about being taken advantage of or being physically harmed if her family and friends can’t help her — experiences she’s had in the past.

“I like being able to know what to expect, and thinking about the future is a bit terrifying to me,” she said.

Johnson’s situation isn’t unique.

Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them access government services or care for them directly.

Families, researchers, government officials, and advocates worry that the lack of planning — combined with a social safety net that’s full of holes — has set the stage for a crisis in which people with disabilities can no longer live independently in their communities. If that happens, they could end up stuck in nursing homes or state-run institutions.

“There’s just potential for a tremendous human toll on individuals if we don’t solve this problem,” said Peter Berns, CEO of the Arc of the United States, a national disability-rights organization.

About one-quarter of adults in the U.S. live with a disability, according to the Centers for Disease Control and Prevention. Nearly three-quarters of Americans with disabilities live with a family caregiver, and about one-quarter of those caregivers are 60 or older, according to the Center on Developmental Disabilities at the University of Kansas.

But only about half of families that care for a loved one with disabilities have made plans for the future, and an even smaller portion have revisited those plans to ensure they’re up to date, said Meghan Burke, an associate professor of special education at the University of Illinois in Urbana-Champaign.

“Engaging in it once is good, right? But you can’t only engage in it once,” she said. “It’s a living document, because things change, people change, circumstances change.”

Burke’s research has found several barriers to planning for the future: financial constraints, reluctance to have hard conversations, trouble understanding government services. Creating plans for people with disabilities also is a complex process, with many questions for families to answer: What are their relatives’ health needs? What activities do they enjoy? What are their wishes? Where will they live?

Burke has firsthand experience answering those questions. Her younger brother has Down syndrome, and she expects to become his primary caregiver in the future — a situation she said is common and spreads the work of caregiving.

“This is an impending intergenerational crisis,” she said. “It’s a crisis for the aging parents, and it’s a crisis for their adult offspring with and without disabilities.”

Nicole Jorwic, chief of advocacy and campaigns for Caring Across Generations, a national caregiver advocacy organization, said the network of state and federal programs for people with disabilities can be “extremely complicated” and is full of holes. She has witnessed those gaps as she has helped her brother, who has autism, access services.

“It’s really difficult for families to plan when there isn’t a system that they can rely on,” she said.

Medicaid pays for people to receive services in home and community settings through programs that vary state to state. But Jorwic said there are long waitlists. Data collected and analyzed by KFF shows that queue is made up of hundreds of thousands of people across the country. Even when people qualify, Jorwic added, hiring someone to help can be difficult because of persistent staff shortages.

Jorwic said more federal money could shorten those waitlists and boost Medicaid reimbursements to health care providers, which could help with workforce recruitment. She blamed chronic underinvestment in Medicaid disability services for the lack of available slots and a dearth of workers to help people with disabilities.

“It’s going to be expensive, but this is four decades of funding that should have been done,” she said.

Congress recently put about $12.7 billion toward enhancing state Medicaid programs for home- and community-based services for people with disabilities, but that money will be available only through March 2025. The Build Back Better Act, which died in Congress, would have added $150 billion, and funding was left out of the Inflation Reduction Act, which became law this summer, to the disappointment of advocates.

Jeneva Stone’s family in Bethesda, Maryland, has been “flummoxed” by the long-term planning process for her 25-year-old son, Rob. He needs complex care because he has dystonia 16, a rare muscle condition that makes moving nearly impossible for him.

“No one will just sit down and tell me what is going to happen to my son,” she said. “You know, what are his options, really?”

Stone said her family has done some planning, including setting up a special needs trust to help manage Rob’s assets and an ABLE account, a type of savings account for people with disabilities. They’re also working to give Rob’s brother medical and financial power of attorney and to create a supported decision-making arrangement for Rob to make sure he has the final say in his care.

“We’re trying to put that scaffolding in place, primarily to protect Rob’s ability to make his own decisions,” she said.

Alison Barkoff is acting administrator for the Administration for Community Living, part of the U.S. Department of Health and Human Services. Her agency recently released what she called a “first ever” national plan, with hundreds of actions the public and private sectors can take to support family caregivers.

“If we don’t really think and plan, I’m concerned that we could have people ending up in institutions and other types of segregated settings that could and should be able to be supported in the community,” said Barkoff, who noted that those outcomes could violate the civil rights of people with disabilities.

She said her agency is working to address the shortages in the direct care workforce and in the supply of affordable, accessible housing for people with disabilities, as well as the lack of disability-focused training among medical professionals.

But ending up in a nursing home or other institution might not be the worst outcome for some people, said Berns, who pointed out that people with disabilities are overrepresented in jails and prisons.

Berns’ organization, the Arc of the United States, offers a planning guide and has compiled a directory of local advocates, lawyers, and support organizations to help families. Berns said that making sure people with disabilities have access to services — and the means to pay for them — is only one part of a good plan.

“It’s about social connections,” Berns said. “It’s about employment. It’s about where you live. It’s about your health care and making decisions in your life.”

Philip Woody feels as though he has prepared pretty well for his son’s future. Evan, 23, lives with his parents in Dunwoody, Georgia, and needs round-the-clock support after a fall as an infant resulted in a significant brain injury. His parents provide much of his care.

Woody said his family has been saving for years to provide for his son’s future, and Evan recently got off a Medicaid waitlist and is getting support to attend a day program for adults with disabilities. He also has an older sister in Tennessee who wants to be involved in his care.

But two big questions are plaguing Woody: Where will Evan live when he can no longer live at home? And will that setting be one where he can thrive?

“As a parent, you will take care of your child as well as you can for as long as you can,” Woody said. “But then nobody after you pass away will love them or care for them the way that you did.”

The post ‘Impending Intergenerational Crisis’: Americans With Disabilities Lack Long-Term Care Plans appeared first on Medika Life.

How was Salk’s vaccine received? Researchers said it was “junk science” and tended to dismiss it, favoring the live virus from Sabin’s lab. Not only was Salk’s vaccine safer, but it was also quickly manufactured and readily available to the public. But the dueling virus controversy lasted until the 1990s when Sabin’s vaccine was discontinued because it could infect others.

The Salk vaccine was involved in an unprecedented 1.8 million children in a human experiment to test its effectiveness. Salk had already tested the vaccine on himself and his family, and none developed polio.

The problem with the notable presence of the polio virus in NYC wastewater is that other countries worldwide still use the Sabin vaccine. Traveling and being vaccinated abroad means the virus has carriers that, unwittingly, bring the virus back to the US. Once here, it quickly enters the wastewater system and can spread the virus to the unvaccinated.

How many know about the 1949 polio epidemic that swept the nation and placed infants in iron lungs? The huge tubes, in short supply, were airlifted from location to location as the virus spread with unprecedented speed, striking the nation’s young. A complete explanation of the virus and how it attacks the body can be viewed here.

From 1916–1919, over two thousand people in New York City, primarily in Brooklyn, died from polio infection, which, thanks to the Industrial Revolution, drove people to cities where they were packed into poor living situations, a lack of nutrition led to disease and sewage quickly carried the virus into homes.

Does that sound familiar? Is wastewater carrying the virus throughout apartment buildings and into homes? Yes, it can last up to one week in those situations. Infection is as close as your sewer system. Other viruses can still live on surfaces, including clothing and towels.

What other virus is being discovered anew in the sewage systems of the US and abroad? Yes, it’s Covid-19, and just like polio, the human waste in the sewage systems carries the virus to distant areas from its origin in someone’s home. As I write, New York state has to combat both polio and Covid-19 in its wastewater.

Up to 30 percent of those infected have no symptoms, and therein lies the main problem. If someone isn’t sick, they don’t think they need to be vaccinated or take steps to protect others by keeping a safe distance or wearing a mask.

The Covid-19 virus has mutated as all viruses do, and the new iterations present new challenges. These mutations have managed to either disguise themselves or, in other ways, avoid the body’s immune system protection and the vaccines that depend on this for our safety.

To ward off the iterations, new innoculations will continue to be needed and, conceivably, into the future. Each fall will bring a new-and-improved vaccine for the still mutating viruses. Viruses don’t stop mutating.

Those who have received misinformation about vaccines and refuse to be vaccinated will continue to present agreeable hosts for the viruses while endangering others.

Politics and business have failed to adequately address this enduring danger in a wish to reassure the general public and get all of us back to business. In my opinion, the CDC’s efforts have been poor, and a shuffling of management has already begun.

The post Polio/Covid Planning, the Poor, Life and Mobility appeared first on Medika Life.

CHICAGO, June 30, 2022 — The Chicago ARC, a new venture collaborative focused on accelerating health equity solutions, has signed Memorandums of Understanding (MOUs) with the University of Chicago Medicine and Sinai Chicago as the organization’s first Founding Healthcare Partners, where they will play a crucial role in directing and piloting new technologies to transform healthcare and improve health equity in Chicago and beyond.

The Chicago ARC was founded on the belief that where you live, work, and play should be positive drivers of your health and how you receive healthcare. Areas of focus and impact for the Chicago ARC include maternal and child health, chronic disease management, rural healthcare, aging in place, behavioral and mental health, and cancer diagnosis.

“We’re creating an innovation community in Chicago centered on the healthcare providers and communities they serve,” said executive director Kate Merton, Ph.D., who previously launched the digital health incubator for Anthem and ran the East coast region of JLABS, J&J Innovations’ science incubator and accelerator lab. “With unprecedented access to and involvement from Healthcare Partners, startups will be able to direct their efforts for the greatest impact and benefit from Partner expertise and clinical networks to test, model and scale new solutions.”

Chicago ARC builds upon the proven ARC model (Accelerate, Redesign, Collaborate) of Sheba Medical Center — a Newsweek Top-10 global hospital — which brings together startups with experienced operators and an extensive healthcare partner network.

“Health systems in Chicago and the Midwest create Sheba’s North American epicenter for bringing global innovation and U.S. healthcare communities together – and the Chicago ARC is bringing that community together in new ways to invite more global investment and innovation,” said Dr. Eyal Zimlichman, chief digital transformation officer and chief innovation officer for Sheba Medical Center. “Now, by combining expertise and market opportunity, Chicago ARC and its Healthcare Partners will catalyze new solutions for some of our biggest healthcare challenges. Sheba Medical Center will share our experience to impact equitable healthcare and benefit from learning together with Chicago-area health systems and the community.”

Areas of Focus for Healthcare Partners

Healthcare Partners will pilot technologies that meet the needs of healthcare professionals and the communities they serve, create a community of learning to connect local and global best practices, and promote collaboration and joint projects. In addition, organizations have prioritized areas for increased focus or additional collaboration.

Kenneth S. Polonsky, MD, Executive Vice President for Medical Affairs and Dean of the Biological Sciences Division at the University of Chicago: “The South Side of Chicago has experienced shrinking health care resources for many years. Partnering with the Chicago ARC creates the dual benefit of identifying and integrating global technologies that meet the needs of our patients and healthcare professionals while enabling the University of Chicago to bring its research and innovation expertise to a local and global community seeking to address health inequities. As a partner, we plan to help enhance and utilize UChicago as a community engagement and collaboration epicenter to understand — and address effectively — the South Side community priorities and needs.”

Dr. Ngozi Ezike, president and CEO, Sinai Chicago: “As the largest private safety-net health system in Illinois, the communities Sinai Chicago serves face some of the city’s most severe systemic barriers and suffer the greatest health inequities. Sinai has a successful track record of working in collaboration with the communities we serve across the South and West Sides of Chicago. Working with the Chicago ARC will support Sinai in scaling our existing programs and resources to further serve our patients equitably and effectively.”

The Chicago ARC also presents significant opportunities for international collaboration, in a model that can be replicated in other U.S. markets. “The work Chicago ARC is undertaking with partners in Israel is an example of how Israel and the United States can share expertise to have a significant impact on the realization of equitable healthcare through innovation and community collaboration,” said Yinam Cohen, Consul General of Israel to the Midwest. “The top research institutions, health systems partners, and providers of Chicago and the Midwest – like those the Chicago ARC is bringing together – present an excellent opportunity for Israeli startups looking to establish and expand their presence in the U.S.” 

About Chicago ARC The Chicago ARC is on a mission to accelerate tomorrow’s healthcare solutions to those in need today. Its venture collaborative provides a trusted U.S. partner for startups, accelerating market entry and growth through matched commercial opportunities, investment, and end-to-end support. The Chicago ARC will be the centerpiece of a $3.8 billion health-focused Bronzeville Lakefront along the scenic shore of Lake Michigan next to downtown Chicago and the largest convention center in the Western Hemisphere. Chicago is the top U.S. city for foreign direct investment, corporate relocations, life science VC funding growth, and female founders. The region is home to over 1,600 life science companies, three tier-1 research institutions, and over 28,000 physicians. For more information, visit https://www.chicagoarc.health/.  

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