Real World Health Care Blog

Tag Archives: underinsured

How to Help Sick Kids Get Better When Insurance Isn’t Enough

During the month of August, Real World Health Care will take a short break from focusing on medical breakthroughs and the researchers who are shaping the future of medicine. We will instead bring you a special series from our sponsor, the HealthWell Foundation, about what happens when families cannot afford the medical treatments their children desperately need. The families we will profile have turned to the Foundation for help, through the HealthWell Pediatric Assistance Fund®, the only fund of its kind.

Since its launch in 2013, HealthWell’s Pediatric Assistance Fund has awarded more than $850,000 in grants to help more than 400 children start or continue critical treatments covering more than 90 disease areas and conditions, including ADHD, autism, cerebral palsy, Type 1 Diabetes, epilepsy, scoliosis, seizure disorder and many more. The Fund covers family cost-shares for surgical procedures, medical devices, counseling services and prescription drug copays. This week, we’d like you to meet Karis, whose family can’t afford her type 1 diabetes testing supplies.

Imagine this: You take your child to the doctor thinking she has an infection. You discover that she has a life-altering condition and your health insurance doesn’t cover all the costs.

That’s what happened to Alicia Bell when her daughter Karis was diagnosed with type 1 diabetes. Says Bell: “There are no vacations from being a parent, and there are no vacations from being a parent of a T1D child.”

Bell was not only surprised at her daughter’s diagnosis, she was further amazed to find her insurance wouldn’t pay for all the diabetic testing supplies Karis would need.


Did You Know?

60% of bankruptcies in the U.S. are related to medical expenses.


The Bell family is far from unique. Each year, more and more Americans are forced to choose between paying for lifesaving treatments and for food, housing and utilities. People may cut pills in half, skip meals or housing payments or declare bankruptcy. An estimated 29 million Americans are underinsured and more than 60 percent of all bankruptcies in the U.S. are related to medical expenses. In the Bells’ case, Alicia would need to go into serious credit card debt just to pay for her daughter’s diabetes monitoring and testing supplies.

“I would never want money to factor into my daughter’s health care,” Bell says. “I’d sell my

Karis and her new insulin monitor

Karis and her new insulin monitor

house and everything I own if I had to.”

Fortunately, when health insurance is not enough, there is a group that helps close the gap, putting life-changing medications within reach for thousands of people in need and helping to pay for prescription drug copayments, deductibles and health insurance premiums for critical treatments.

A HealthWell Foundation Pediatric Assistance Fund grant not only pays for Karis’ supplies—including an insulin monitor, so Karis doesn’t have to have her finger stuck several times a day—it pays the co-insurance for her hospital and clinic visits and will help pay for an insulin pump if and when she needs one.

Your generous gift to the HealthWell Foundation can help kids like Karis and others afford the medical treatments they desperately need. Consider a monthly gift, a tribute or memorial donation, or an employer-sponsored fundraiser or end-of-year giving campaign to make an extraordinary and lasting difference in the lives of kids in need. Donate today.

Focusing on Recovery, Not Financial Burdens

During the month of August, Real World Health Care will take a short break from focusing on medical breakthroughs and the researchers who are shaping the future of medicine. We will instead bring you a special series from our sponsor, the HealthWell Foundation, about what happens when families cannot afford the medical treatments their children desperately need. The families we will profile have turned to the Foundation for help, through the HealthWell Pediatric Assistance Fund®, the only fund of its kind.


Did You Know?

HealthWell’s Pediatric Assistance Fund is the first of its kind. It was opened in response to families who had nowhere else to turn.


Since its launch in 2013, HealthWell’s Pediatric Assistance Fund has awarded more than $850,000 in grants to help more than 400 children start or continue critical treatments covering more than 90 disease areas and conditions, including ADHD, autism, cerebral palsy, Type 1 Diabetes, epilepsy, scoliosis, seizure disorder and many more. The Fund covers family cost-shares for surgical procedures, medical devices, counseling services, prescription drug copays and other out-of-pocket costs. This week, we’d like you to meet Anna, who was born with a rare disorder affecting the brain.

In the following letter, Anna’s mom Mary, from Delta, Pennsylvania, shares the challenges of affording care for their little girl and the big difference that HealthWell’s Pediatric Assistance Fund grant made in their lives.

Anna, after surgery, healing & growing

Anna, after surgery, healing & growing

Our daughter, Anna was born with a birthmark on her face and scalp. The doctors suspected there was more to the story. A CT scan of her head confirmed the diagnosis of Sturge-Weber Syndrome, a rare disorder affecting the brain. We spent the next few weeks as new parents trying to understand our beautiful little girl and the rare disease she had. When she was just 3 weeks old, she had her first set of seizures. It was terrifying to see her little body so out of control. She was admitted to the hospital and started on medication. The doctors were able to control the seizures, but never for too long.

Since that first seizure many years ago, we have celebrated many days without seizures and suffered through the days when they eventually returned. We changed medications, avoided activity that might over fatigue her, struggled through specialized diets and prayed for a cure. Eventually, Anna was scheduled to undergo a radical surgery to remove the diseased half of her brain. We knew this could offer her a future without seizures, but we also knew the incredible cost we faced.

With the help of the HealthWell Foundation, Anna had her surgery. She is back home, seizure free – healing and growing. Our family has been able to focus our attention on Anna’s recovery knowing the financial burden has been reduced.

We are so grateful for the financial support the HealthWell Foundation has offered to us. With their help, we are able to celebrate the wonderful little girl God has blessed us with and we look forward to her bright future.

Help kids like Anna get the medical treatments they desperately need. Ask your employer today about how your donation to HealthWell’s Pediatric Assistance Fund can go farther with a matching gift program. Donate today.

“I Don’t Know What I Would Have Done without HealthWell”

During the month of August, Real World Health Care will take a short break from focusing on medical breakthroughs and the researchers who are shaping the future of medicine. We will instead bring you a special series from our sponsor, the HealthWell Foundation, about what happens when families cannot afford the medical treatments their children desperately need. The families we will profile have turned to the Foundation for help, through the HealthWell Pediatric Assistance Fund®, the only fund of its kind.


Did You Know?

100 percent of donations to HealthWell go directly to patient grants and services.


Sophie

Sophie

Since its launch in 2013, HealthWell’s Pediatric Assistance Fund has awarded more than $850,000 in grants to help more than 400 children start or continue critical treatments covering more than 90 disease areas and conditions, including ADHD, autism, cerebral palsy, Type 1 Diabetes, epilepsy, scoliosis, seizure disorder and many more. The Fund covers family cost-shares for surgical procedures, medical devices, counseling services, prescription drug copays and other out-of-pocket costs. This week, we’d like you to meet the Ambassador of the Pediatric Assistance Fund, Sophie.

Sophie suffers from a chronic illness affecting millions of Americans: asthma. In her own words, Sophie describes what it’s like to live with asthma and how HealthWell helped her family afford the medication she needs.

“Finding HealthWell was like a breath of fresh air,” says Pat, Sophie’s father.

Sophie is one of 14 million children in the United States whose family is underinsured. You can help kids like Sophie afford the medical treatments they desperately need by donating your tax deductible gift to HealthWell’s Pediatric Assistance Fund. Donate today. Watch Sophie’s story.

Sophie TY

 

Many Insured Americans Not Getting the Healthcare They Need

Last month, FamiliesUSA.org issued a sobering report about the disconnect between having medical insurance and receiving the healthcare one needs. The report concluded that for many Americans with non-group coverage (as opposed to having insurance from an employer or a public coverage program), deductibles and other out-of-pocket costs are prohibitively high and are associated with many of these insured consumers forgoing needed healthcare. According to the report, more than one in four adults who bought insurance for themselves or their families last year had to skip medical care because they couldn’t afford it.

Linda Barlow

Linda Barlow

“The Affordable Care Act has increased access to health insurance and financial assistance for millions of Americans,” wrote the report’s authors. “But even with the new assistance that helps consumers pay their premiums and out-of-pocket healthcare costs, one-quarter of consumers who buy insurance on their own still have problems being able to afford needed care.”

According to the report, adults with non-group coverage went without:

  • Tests, treatments or follow up care (15% of adults)
  • Prescription drugs (14%)
  • Medical care (12%)
  • General doctor care (12%)
  • Specialist care (11%)

High deductibles, copayments and coinsurance can leave some people in the position of having to make very tough decisions. Pay for needed medications or the electric bill? Pay for a doctor-recommended test or make a car payment? Pay for treatments and follow up care or pay the monthly mortgage?

These are decisions no one should have to make. No one should have to decide between cancer treatments and putting food on the table. No one should have to sell their car to pay for their child’s asthma medication. No one should go into bankruptcy just because they’ve been diagnosed with a life-changing illness.

If you or someone you know is facing decisions like these, know that help is available. Patient advocacy organizations, drug manufacturers, and charitable patient assistance programs may be able to provide financial assistance.

Do you know of an organization that helps provide a financial lifeline to Americans with inadequate insurance? Let us know about it in the comments section.

 

 

A Tale of Two Liver Transplants: Altruistic Compassion for a Compassionate Altruist

“Talk about your life changing in an instant,” Helen said, remembering her first diagnosis of acute liver failure. The doctor told her family there was nothing more to be done, and she was given two weeks to live.

Helen Bozzo

Helen Bozzo

Helen Bozzo had spent most of her time being a mother. Her husband, a farmer, worked long hours in the fields in their rural California farm, and early on in their marriage the couple decided that she would stay home to care for their three children. She was the “homeroom mother,” volunteering in classes and with the school’s administration, PTA and athletics department. Helen’s passion was helping others, and not just in the school.

Eventually moving into the town, Helen enjoyed taking others into her home – her children’s friends, her son’s comrades from the Marine Corps – she always had a full house and enjoyed taking these friends in like her family.

“I enjoyed cooking for everyone, reading, knitting and gardening,” she said. “Still things I enjoy doing today, but loving and helping people is my number one pleasure in life.”

Helen had returned from what she remembers as a great family vacation to Disneyland when she began to get ill quickly. Her doctor had her admitted to her local hospital where, after receiving tests and specialists’ opinions, she was given that shocking diagnosis.

But her family could not accept that. They sought a second opinion, and got Helen an appointment at a local cancer center. Here she was evaluated and admitted to the hospital, where she spent a month undergoing “every test known to man” and waiting desperately for an answer. All that was clear was that her liver and now her kidneys were failing. She was placed on dialysis.

“I was going downhill fast,” Helen recalls.

After much deliberation, Helen’s doctors decided to put her on the transplant list. Eight days later, on April 29, 2007, a suitable liver was available and she had the transplant. Her health began to improve immediately.

More than a third of people on the transplant list die each year waiting for an organ, according to Helen. She would later come to realize just how lucky she was, saying, “The odds of finding a match in such an acute critical case as mine are astronomical,” she said. “The doctors told me later that I was within hours of death.”

For the time being, Helen was in the clear. She had great insurance and her payment plan kept her bills covered. Though she was in debt, she was able to keep her medications coming. Considering how hard her recovery was, that was a very good thing. It took Helen a year to be able to walk again, but she eventually made a full recovery.

For the next four years, things went well for Helen. She became active again, and that meant re-embracing her spirit of altruism. She became active in the organ donor/recipient community, particularly in a liver transplant support group in which she helps others through the process of getting a transplant. She became a California Donate Life Ambassador, speaking at various organizations about the importance of becoming an organ donor. What energy Helen had, she gave to others.

Shortly before her third walk with the American Liver Foundation’s “Walk for Life,” Helen decided she had to see her doctor. She had started feeling tired after a recent road trip with a friend, and now she was feeling worse. To her dismay, the doctor’s test showed some major problems. After ten days of testing in the hospital, her liver was failing again. She was placed on the “Status 1” list in five states, the top of the transplant list.

“It was life or certain death,” Helen said.

Three days later, on September 26, 2011, Helen had her second liver transplant.

Along with this transplant, however, came three expensive new medications that her insurance would not cover. Charging thousands of dollars to her credit card every month, Helen was becoming massively over-extended. She called every agency she could, but no one could help her until she found the HealthWell Foundation. HealthWell is a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog). Helen qualified for a grant that helped cover her copays for her medications.

Now, Helen and her husband are back on their feet. As always, Helen turned her attention to paying it forward to others as soon as she could, donating to the HealthWell Foundation, continuing to support transplant recipients and raising over $25,000 in her walks for research and awareness of liver disease and failure. She spends time with her ever-growing family and her husband, with whom she just celebrated 40 years of marriage. When she’s not helping others or enjoying the love of her family, she still likes to knit, garden and cook, and hopes to see all 50 states one day.

“We are so very thankful to the HealthWell Foundation,” Helen said. “I know of families in our transplant support group that have lost their homes because they were in the same situation we were in. Thankfully we found the HealthWell Foundation in time. The home we had worked so hard for, we were able to keep. The peace of mind in knowing that every month when I went to the pharmacy I would have the money to pay for my medications meant everything to our family. The stress was gone and I could focus on my recovery in peace.”

We at RealWorldHealthCare are thrilled to see patients like Helen in such good places, doing such wonderful things. Please share your thoughts in the comment section.

Categories: Cost-Savings, General

How HealthWell Foundation’s MS Fund Helped Charlie Get His Life Back on Track

A Note from Our Sponsor: March is National MS Education and Awareness Month. Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

Charlie Barron was raised to set goals, make plans, get things done. But setting and meeting goals has become exceptionally hard since Charlie, 46, discovered he has multiple sclerosis.

Charlie Barron

Charlie Barron

Because of his MS, Charlie is unable to work and therefore struggles to pay for the expensive treatments he has needed since he was diagnosed in 2010, a decade after his symptoms first appeared. He received HealthWell Foundation grants in 2014 and 2015.

Before his diagnosis, this resident of DeKalb, Ga., had a career as a chef. On the job, he often stood 12-14 hours a day, despite a pins- and-needles sensation in his feet and numbness in his legs that went on for years. For a long time, he considered his physically demanding work the cause of his pain, yet his employer provided no health insurance.

Later, Charlie combined his cooking skills with his interest in fitness to open his own business.  As a personal trainer, he led clients in morning workouts in their homes, then cooked them a healthy breakfast in their kitchens. At that point, he bought himself health insurance.

However, his insurance policies have been unreliable in covering his medications. For instance, his first medication was covered, but when it proved ineffective for him, his insurance company declined to pay for the next prescribed treatment. Moving from private insurance, he obtained Medicare coverage through disability and thought those challenges would change. Recently his doctor recommended adding a second drug to Charlie’s treatment plan which has staved off relapses for the last two years, but the out-of-pocket expense was still unmanageable.

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Editor’s Note: RealWorldHealthcare turns 2 today! To help us celebrate our anniversary, we think there’s no better gift than a donation to our sponsor, the HealthWell Foundation. Learn how you can help support patients in need. Click here.

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In a note thanking the Foundation for its financial assistance, Charlie described how he felt when he found out the cost of his care.  “Even though I was ready to physically fight to get my life back from MS, my finances were not so ready for battle,” he wrote. “I learned that the medication my doctor prescribed would cost upwards of $1,100 per month. I felt that I had been knocked down before I even had a chance to throw the first punch.”

“The HealthWell Foundation has given me the peace of mind to focus my energy on fighting MS and encouraging others to do the same,” Charlie’s letter said.  He continues learning about MS at a local MS center, takes physical therapy and has participated in activities such as a painting class with others coping with MS.

Social media connects him with additional people with the illness. Hearing about others’ experiences with MS, giving them encouragement or simply offering a kind word to lift their spirits gives Charlie strength.

Benefiting from the supportive care of his wife, brother-in-law and 13-year-old daughter, he urges other people with MS to seek support from family or a strong support group.  For caregivers, he recommends researching MS through the Internet, books or the MS Society to know what to expect.

Not comparing the present with the past is important to him as well. “It’s not about what you used to do, it’s about what you are trying to do now,” Charlie says.

Are you an MS patient like Charlie? How are you coping with the disease and its treatment costs? Let us know in the comments.

 

Categories: Cost-Savings, General

Four Ways Data is Transforming Your Health

The increasing availability of data about health care in the U.S. is empowering patients to take charge of their care and quietly revolutionizing how patients are treated. Last month, the Centers for Medicare & Medicaid Services released data on which services were provided by over 880,000 health care providers, how many times each service was provided, and what the providers charged. Yesterday, top health and technology experts for the federal government and the Brookings Institution gathered to discuss how the growing catalogue of public health care data is leading to profound improvements in America’s health care. The event was hosted by Brookings’ Engelberg Center for Health Care Reform in collaboration with 1776 DC’s Challenge Festival.

Jamie Elizabeth Rosen

Jamie Elizabeth Rosen

Here are the top four ways that data transparency is already beginning to transform Americans’ health. The benefits are expected to grow as the data is analyzed, matched with other sources, and organized into user-friendly and accessible formats.

 

1.    Selecting the best doctor

When Farzad Mostashari learned that his mother needed an epidural steroid injection, he wanted to find out which orthopedic surgeon was the best at this specific procedure. So he searched the millions of medical claims recently released by the Centers for Medicare and Medicaid Services (CMS) to discover which providers were the most experienced in this procedure.

An interesting result emerged. “There is one provider who does more than everyone else combined,” said Mostashari, who is a Visiting Fellow at the Brookings Institution, where he is focused on payment reform and delivery system transformation. “He’s probably pretty good.”

As health care data increasingly becomes available, patients will have more information to make the most rational decisions for their health care, said Kavita Patel, a physician and fellow in the Economic Studies program and managing director for clinical transformation and delivery at the Engelberg Center.

Patel asks her patients why they choose to see her. “Nobody’s ever said: ‘I looked up your quality scores and saw that your out-of-pocket costs are less than the average provider in your area,” Patel said of her 12 years in medical practice. “This is one of the first times that everyone in this room can take out a laptop…and look at this data.”

Mostashari added that the data can be used to identify outliers. For instance, he found that while the average orthopedic surgeon performed controversial spinal fusion surgeries on 7 percent of the patients they saw, some did so on 35 percent. This knowledge empowers patients to choose providers that best align with their health care values and preferences.

 

2.    Reducing costs

The newly-released CMS data enables comparisons of the prices different providers charge for the same services. This data reveals that in some cases providers charge vastly different rates to Medicare for the same services, Mostashari said. The Wall Street Journal provides a consumer-friendly database detailing the types of procedures, number of each, and costs per procedure charged by individual health care providers.

Last year’s release of hospital charges led some hospitals that were charging higher rates to uninsured and underinsured patients than their peers to seek advice from CMS. “Some hospital associations called us and said, ‘We want to change. Help us develop new accounting practices to set prices more fairly for those who are uninsured or underinsured,’” said Jonathan Blum, Principal Deputy Administrator at CMS.

The ability to access and analyze a growing amount of data on procedures performed and their outcomes also helps patients and providers avoid low value services and make decisions about the relative risks and benefits of different procedures. Patel pointed out an ABIM Foundation initiative called Choosing Wisely that equips providers and patients with lists of procedures that should be carefully considered and discussed to ensure that care is supported by evidence, not duplicative, free from harm, and truly necessary.

 

3.    Promoting accountability

When health care providers know that their records will be publically available for scrutiny, they are incentivized to ensure that they won’t be embarrassed by what people find. This can profoundly change which procedures providers choose. For instance, one analysis revealed a wide disparity between the percentage of black versus white patients who were tested for cholesterol levels. “Simply asking providers how often they were doing [cholesterol tests], without any payment incentive,” removed this disparity, said Darshak Sanghavi, the Richard Merkin fellow and a managing director of the Engelberg Center. “This is one example of how simple transparency can improve health care and ultimately save lives.”

 

4.    Expediting spread of best practices

Jonathan Blum, Principal Deputy Administrator at CMS, has seen data transparency expedite the uptake of best practices by health care providers and public health authorities. For example, when analyzing the data on dialysis providers, CMS found that there was an uptick in blood transfusions by certain providers in specific geographic regions. “Our medical team got on the phone and called the dialysis providers and said: ‘Did you know you are doing more blood transfusions than your peers?’” The result? Those providers decreased blood transfusions, improving health outcomes for their patients. The same pattern occurred for nursing home facilities that overused antipsychotic drugs.

“I want to convince folks that you can change policy, you can change procedures, you can make things safer,” Blum said. “Data liberation can help us build [accountable care organizations], help us build better payment policies, help us reduce hospital readmissions. There is tremendous opportunity ahead for us.”

Bryan Sivak, Chief Technology Officer at the Department of Health & Human Services, added that data transparency is affording entrepreneurs from outside the health care sector – such as startups Aidin, Purple Binder, and Oscar – the potential to transform the health care system.

“We’re sitting on the edge of an incredible moment in history,” he said. “Everybody is looking at things in a different way because everybody understands that we have to do things differently.”

“Government data is a public good and a national asset,” said Claudia Williams, Senior Advisor for Health IT and Innovation for the U.S. CTO in the White House. “It’s something we have to release if we can to allow innovation and change.”

How do you make your health care decisions? Have you used any of these new tools?

Categories: General

Implementation of Health Care Law Expanding Coverage to More Young Adults

LJB head shot 03

Linda Barlow

For the first time in nearly a decade, the number of 19-25 year-olds gaining access to health insurance is on the rise, according to the Commonwealth Fund 2012 Biennial Health Insurance Survey. Researchers point to a provision in the 2010 Patient Protection and Affordable Care Act (PPACA or ACA), which allows young adults to stay on their parents’ health insurance until age 26, as a likely cause of this groundbreaking trend.

“The early provisions of the Affordable Care Act are helping young adults gain coverage and improving the affordability of health care during difficult economic times for American families,” said Sara Collins, Ph.D., a Commonwealth Fund vice president and lead author of the Biennial Survey’s report, Insuring the Future: Current Trends in Health Coverage and the Effects of Implementing the Affordable Care Act.

The improvements in young adult health coverage are significant, according to the Biennial Survey:

  • Nearly eight in 10 (79 percent) of Americans ages 19-25 reported that they were insured at the time of the survey in 2012, up from 69 percent in 2010, or a gain in health insurance coverage for an estimated 3.4 million young adults.
  • The share of young adults in this same age group who were uninsured for any time during the year prior to the survey fell from 48 percent in 2010 to 41 percent in 2012 – an estimated decline of 1.9 million, from 13.6 million uninsured young adults in 2010 to 11.7 million in 2012.

Of the estimated 3.1 million young adults who are now covered through the ACA, 60 percent are leveraging it for mental health, substance abuse, or pregnancy treatment, according to a study from the Employee Benefits Research Institute (EBRI). For one large, national employer profiled in the study, the newly-covered young adults used about $2 million in health care services in 2011 – about 0.2 percent of the employer’s total health spending.

Access is a major barrier to care for young adults, who were previously terminated from their parents’ plans when they turned 19. According to the Henry J. Kaiser Family Foundation (KFF), young adults typically face difficulties obtaining their own coverage because they work in entry-level, low-wage or temporary jobs that are less likely to provide health insurance. Lack of insurance makes it harder for young adults to receive adequate medical care –  a problem that plagued one in five young adults before the ACA began to take effect.

“Young adult women have additional health needs and are particularly vulnerable when they are uninsured, as they are at an age when they require reproductive health services,” noted Karyn Schwartz and Tanya Schwartz, authors of KFF’s Issue Paper, How Will Health Reform Impact Young Adults? “Having health insurance and consistent access to the medical system may increase the likelihood that they receive timely pre-natal care if they become pregnant.”

Meanwhile, some skeptics are expressing concerns about key aspects and implications of the Act, from objecting to young single males being required to purchase a plan including maternity benefits and well-baby coverage – to others saying that full implementation of the ACA in 2014 will mean much higher premiums for young adults. Many have challenged these assertions, however, noting that the ACA’s age-based pricing requirements are largely in line with premiums individuals are paying now.

Although the news for young adults is mostly good, the survey also found that 84 million people – nearly half of all working age U.S. adults – went without health insurance in 2012, or faced out-of-pocket costs that were so high relative to their income that they were considered “underinsured.”

The survey did indicate that 87 percent of the 55 million uninsured Americans in 2012 are eligible for subsidized health insurance through the insurance marketplaces or expanded Medicaid under the ACA. Up to 85 percent of the 30 million uninsured adults also might be eligible for either Medicaid or subsidized health insurance plans with reduced out-of-pocket costs.

Click here to learn more about pricing options for young adults seeking health insurance coverage.

Now it’s your turn. Does rollout of the ACA mean more accessible and affordable health insurance coverage, or will it drive up costs, particularly for younger Americans? Get the conversation started.

Categories: Access to Care