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A Kidney Transplant and the High Cost of Drugs to Maintain It

President Trump recently addressed his plan to reduce the high cost of prescription drugs, a major priority of his and HHS Secretary Azar. This is one of a series of blogs by Americans who have been challenged by expensive medications.

I’ve had high blood pressure even though I eat healthy, despite a bout of anemia, I appeared healthy and athletic.

In 1996, I was turned down for life insurance. I visited my doctor and after a few tests I learned that there was protein in my urine, but it was never explained what that meant.

I continued to visit my primary physician regularly, and in 2004, I went to a urologist to have my prostate checked. He informed me that it was fine—but my kidneys were failing. He asked for the name of my primary care doctor and directed me to go to the emergency room immediately.

My kidneys eventually were lost due to hypertension. I had to go on the dialysis for two years, and then I was lucky to be able to get a kidney transplant from a living donor and not have to endure what might be a five-year wait on the transplant list.

I’ll have to take immunosuppressive drugs for the rest of my life to keep my body from rejecting the transplanted kidney. Additionally, I need to take medication to control my high blood pressure and meds to help control gout. Those drugs cost me hundreds of dollars out of pocket every month.

But with dialysis, you have be connected to a machine for four hours a day, three days a week. I’ll take those pills in a heartbeat rather than go through dialysis. I’m a small-businessman: I teach business courses at Bowie State University and consult for healthcare organizations and for businesses on providing more affordable care for their employees. That’s hard to do hooked up to a dialysis machine.

I’m fortunate. I’ve been able to manage the costs so far. I’m currently 65 and I probably won’t retire because I’ll have to continue working, and one of the reasons is because of the cost of the medications that I will constantly have to pay for.

But other people aren’t as fortunate. Something has to be done about the increasing costs and complexity of charges of prescription drugs. You have 40 million people with chronic kidney disease, and that number is only going to go up.

That’s why I’ve become active in advocating for kidney patients, as a leader and founding member of a number of kidney patient advocacy groups.

I’m generally a free-market person, but there’s a role for government in better coordination in drug pricing, especially for these life-saving drugs. We all have to deal with this issue.

Posted in: Drug Pricing
Tagged: patients, prescriptions, Medication

Costly Drug Put Retirement at Risk for Breast Cancer Survivor

President Trump recently addressed his plan to reduce the high cost of prescription drugs, a major priority of his and HHS Secretary Azar. This is one of a series of blogs by Americans who have been challenged by expensive medications.

I worked all my life, becoming an executive in the U.S. chemical industry, and I saved all my life for retirement. And two years after I retired, I was diagnosed with breast cancer.

As a breast cancer patient and survivor, the high out-of-pocket costs of the life-saving brand medication I needed cost me $1,000 a month in out-of-pocket costs, despite Medicare coverage. Since I live on a fixed income, the cost put my retirement at risk. I was supposed to take this drug for five years. Just imagine, it would cost me $60,000 over five years to stay healthy.

I was devastated and fearful. I was afraid I could die. I was fearful of losing my house.

Fortunately, after about a year, a generic alternative came on the market, reducing my cost to $40 a month. It was a lifesaver—both for my life and my retirement. I was thrilled.

I’m fine and healthy now and no longer on the medication. I’m cancer-free, although I’m still being monitored by my surgeon and oncologist.

Retirement is great. I read a lot. I keep abreast of politics. I’m an avid cook and like to entertain. And I enjoy my cat, Limoncello.

I’m just one person. Yet, there are countless people who face the anxiety and challenges of the high costs of drugs. It’s not an easy issue. I think there’s a delicate balance between keeping costs down and ensuring that drug innovation is robust. That’s why I’m encouraged that the issue of drug pricing is a priority for President Trump and Secretary Azar.

Posted in: Drug Pricing
Tagged: patients, Medication, Prescription

I Won’t Go Into Debt to Afford My “Wonder Drug”

President Trump recently addressed his plan to reduce the high cost of prescription drugs, a major priority of his and HHS Secretary Azar. This is one of a series of blogs by Americans who have been challenged by expensive medications.

I worked for an insurance company until I retired a year ago, and I was still stunned by the high cost of a prescription drug I was taking to control the pain and reduce the outbreaks of plaque psoriasis.

It’s a nasty genetic condition that leads to deep, itchy, painful sores on my skin. I had been taking a “wonder” drug for five years that was basically paid for by health insurance through my employer and a copay assistance company. My copay was only $5 a month.

But when I retired and went on Medicare and a supplemental plan, I learned that my drug is on a tier where I would have to pay 33 percent of the cost. I was told that I didn’t qualify for copay assistance. Basically, it was going to cost me about $7,200 a year. I have only about $18,000 in savings and my Social Security and small pension come to less than $24,300 a year. You can see there’s not much there to live on, so I stopped taking my prescription.  It was going to quickly drain my savings.

Now I do the best I can with a prescribed topical ointment for sores on my body and a cream for my face.

It’s not fair. I’m basically healthy. I eat healthy. I live healthy. I didn’t even draw my Social Security until I was 65 and then I worked another 10 years, paying into it. I saved the government money. Yet I’m feeling like I’m being punished.

It’s not right in this country that I would have to beggar myself. I’ve done my part and my country is not doing enough. I will not sell my house to pay for this medication. I’m leaving my house to my two sons. And it’s not like I can go back to work to pay for the medication—I’m 76, who’s going to hire me? I’ll just sit here and suffer if I have to.

The whole government has to get together and do something for the people it serves. For my part, I’m volunteering with a patient advocacy group that’s fighting for lower prescription drug prices. I don’t get paid, but it gives me something to do with my time to help myself and others.

Posted in: Drug Pricing
Tagged: patients, prescriptions, Medication

Refinancing My Home to Pay the High Cost of a Prescription Drug

President Trump recently addressed his plan to reduce the high cost of prescription drugs, a major priority of his and HHS Secretary Azar. This is one of a series of blogs by Americans who have been challenged by expensive medications.

Two years ago, I was diagnosed with multiple myeloma, an incurable blood cancer. It’s a terrible diagnosis, but I have eight grandchildren and a good life and I was going to fight. But after the blow of the diagnosis and going through a stem cell transplant and other treatment, I made the cruel discovery that the cost of the drug I had to take to maintain my health would cost me hundreds of dollars a month.

There was even a 20 percent price increase last August, and now I have to pay $640 out of pocket every month for the medication.

I’m retired as a public school teacher. I thought I had decent health insurance: Medicare and the best supplemental plan I could buy. But the wind was blown out of that.

Sadly, I had to use my credit card and ran up $10,000 in debt last year to stay alive and pay for my prescription. I had to refinance my home recently—and it was three years from being paid off.

Yet, I’m one of the lucky ones. I can take on debt and refinance my home. I’m not happy about it but I can do it. I’m really concerned because many, many other people can’t afford their drugs and there’s no avenue for them. There’s literally no way for them to pay for their medications.

This isn’t right in America. The drug companies are earning billions on the backs of sick people. There doesn’t seem to be any limitations on drug prices—this system isn’t working.

I’m not a political person, but now I have to be. Now I volunteer with an advocacy group that’s fighting for reasonable drug prices.

The government has a role to play in fixing this. Admittedly, I’m not well-versed in politics and what the President can do. But I hope he consults with HHS Secretary Azar and pulls everybody together to come up with a solution.

I’m in remission, and I want to stay that way as long as possible, and to be there for my grandchildren.

Posted in: Drug Pricing
Tagged: patient, medicine, prescriptions

Beyond Pregnancy Prevention: Preparing Youth for the Future

Sixth installment of the “Self-Sufficiency Series: Solutions from the Field”

This series profiles local programs from across the country that are implementing “Principles of Economic Mobility” contained in President Trump’s Executive Order on Reducing Poverty in America by Promoting Opportunity and Economic Mobility.

Every young person deserves a bright future—including youth currently navigating the foster care system and those with troubled histories who have been displaced from their homes. Many of these youth have the good fortune of leaving the system to be reunited with their families or adopted.  But for the more than 18,000 foster care youth who age out of care at the age of 18 each year, homelessness and a lack of self-confidence, gainful employment and education are too often an unfortunate reality.

One federally-funded youth life skills program in Madison Heights, Michigan, is at the forefront of addressing these issues, providing entrepreneurship, employment and educational training opportunities to youth who are in foster care in or around the Madison Heights local community. 

For these youth to become successful in the diverse communities where they live, we must provide them with the resources they need to guide them into becoming self-sufficient, productive citizens, a goal of the President’s recent Executive Order on economic mobility. The Family and Youth Service Bureau’s Adolescent Pregnancy Prevention (APP) Program is rising to that challenge by supporting organizations and communities across the nation with federal grants to help ensure our foster care youth have the knowledge, skills and support they need to make healthy decisions and successfully transition to adulthood.

Funded through the bureau’s Sexual Risk Avoidance Education Program, Bethany Christian Services (BCS), implements approaches from the evidence-based Teen Outreach Program curriculum to provide learning activities, workforce development, and stipend work experiences to foster care youth. The program teaches youth the basic life skills they need to achieve educational goals, employment training and entrepreneurial skills through a variety of activities, including career exploration, budgeting, resume building, pregnancy prevention education, and more.

Program participants are assigned case managers to assist them with taking the necessary steps to reach their greatest potential in life. Beyond pregnancy prevention education, BCS teaches youth invaluable lessons to foster self-sufficiency and build self-confidence.

BCS is just one of many examples of the bureau’s grantees who are on the ground preparing our youth for the future. To learn more about the APP Program’s state, tribal and community efforts, please visit the bureau’s website

Bethany Christian Services in Grand Rapid, MI is at the forefront of helping at-risk youth with educational and employment opportunities.

Posted in: Programs for Families and Children
Tagged: self-sufficiency, employment, youth, foster care

Between My Cancer and Remission, a Costly Drug

President Trump recently addressed his plan to reduce the high cost of prescription drugs, a major priority of his and HHS Secretary Azar. This is one of a series of blogs by Americans who have been challenged by expensive medications.

Eighteen years ago, I was 54 and a healthy guy. I went for an ordinary physical and my doctor, whom I had known for years, did the regular blood workup. Little did I know that I would be starting a journey through the often incomprehensible world of drug costs.

My doctor recognized that there was something different, something wrong with my blood labs. He quickly got me in to see specialists, and the news that came back was bad. I was diagnosed with chronic myelogenous leukemia (CML), a cancer that starts in the bone marrow. The standard treatment then included chemotherapy and for some patients, a bone marrow transplant; the treatments then were “harsh, invasive and not very effective,” according to the National Cancer Institute. I took the tests but decided against the transplant.

I endured six months of difficult, debilitating chemotherapy—I lost 35 pounds and all my hair—and also studied up on the current state of research. I got into a clinical trial studying an oral anti-cancer therapy. Today, this is the most effective treatment option for this type of leukemia — the pills allowed me to manage my chronic disease.  

These oral medications were life-changing for me, allowing me to continue to work—I’m a retired banker now after 30 years in the field—and live an active life.

But the medications prescribed by my doctors required me to pay thousands of dollars a year even with my Medicare Part D plan.

I’ve been able to pay so far. I drive a used car, my house is paid off. I sold off some property. I get Social Security and a small pension.  I worked my whole life. I’ve squirreled away money, but I’d rather spend my money on doing something good than on my medications.

I can do it, but I worry about the people who can’t. I volunteer at the Children’s House at Johns Hopkins Hospital in Baltimore, and I see the added emotional toll on families cause by financial worries.

I’m in remission now, and I’m hoping that I’m not going to need my medication. My goal is to do something helpful.  I want my story to be a message of hope.

Our government needs to play a role in addressing the price of prescription drugs, because the current situation just isn’t sustainable.

I’m grateful that the President and Secretary Azar are putting America’s patients first.

Posted in: Drug Pricing
Tagged: patient, medicine, prescriptions

Putting patients at the center of KidneyX

Dialysis patients typically spend 12 hours a week attached to a machine. I saw this firsthand caring for my mother, who spent the final 14 years of her life on dialysis. From her first day to her last, little changed in her treatment.

The current state of innovation for treatment of kidney disease is abysmal. Some 30 million Americans suffer from kidney disease, yet the solutions are nearly identical to what they were decades ago. People with chronic kidney disease deserve better from our healthcare system.

That is why the Department of Health and Human Services and the American Society of Nephrology have partnered to create the Kidney Innovation Accelerator (KidneyX). Together, we can rapidly increase the development of drugs, devices and digital health tools spanning prevention, diagnostics and treatment of kidney diseases.

KidneyX will engage various stakeholders, including nephrologists, physicians, and entrepreneurs. However, there is one stakeholder whose voice will always come first: the patient.

Today, at HHS headquarters in Washington, D.C., 10 patients suffering from chronic kidney disease met with HHS officials to tell their stories. Secretary Azar, along with staff from the FDA, CMS and NIH listened to understand how KidneyX can best support patients. I’d like to share the experience of Nichole Jefferson, who explains her journey with kidney disease:

Nichole Jefferson

“As a kidney transplant recipient, I am enthusiastic about Kidney X because it can save others from going through the turmoil I experienced. My kidney disease journey began in October 2003 with a visit to the emergency room. After hours of testing, I was presented with the shocking diagnosis of end-stage renal disease.

“During the emergency room visit I learned I would have to start dialysis immediately. I was somewhat familiar with dialysis because of an uncle who had experienced kidney failure in the early 1980’s. I was under the impression that in the 20-plus years that my uncle had experienced dialysis, things had changed, and it wouldn’t be as difficult as it was for him. Imagine my surprise when I realized there hadn’t been much change in the treatments and I would essentially have the same options and suffer the same horrible side effects of dialysis.

“Everyone was ‘sentenced’ to four hours of treatment, three days a week, on the same day at the same time, week after week after week. When evaluating this tight regimen along with my work schedule and LIFE, I chose peritoneal dialysis. Although I was able to be treated while I slept, it was not without complications. There were several bouts of peritonitis, some of which required extensive hospital stays.

“On June 12, 2008, I received the gift of life--a kidney transplant. The transplant allowed me to watch my daughter grow into a lovely young woman. While watching her grow, I wondered if she, too, would have this disease. Kidney X gives me hope that my daughter, along with future generations, will be able to avoid the agony I experienced with kidney disease. It is my aspiration that Kidney X brings alternatives and ultimately a cure for chronic kidney disease.”

Patients like Nichole deserve the same level of innovation as we’ve seen in treating heart disease and cancer. It’s time to move past the status quo. KidneyX is our solution.

To learn more about how KidneyX will support patients, and how patients will support KidneyX, visit http://www.kidneyx.org/

Posted in: Health Data, Health IT, Prevention and Wellness
Tagged: kidney, KidneyX, patients

New Child Care Solutions to Support Working Families

Fifth installment of the “Self-Sufficiency Series: Solutions from the Field”

This series profiles local programs from across the country that are implementing “Principles of Economic Mobility” contained in President Trump’s Executive Order on Reducing Poverty in America by Promoting Opportunity and Economic Mobility.

Any parent will tell you – finding affordable child care so they can pursue training or education to get and keep any job isn’t easy.

The Child Care and Development Fund (CCDF), administered by HHS, provides funding to states, territories, and tribes to subsidize the cost of child care for low-income working families and expand the child care options available to them. Recent HHS research shows that CCDF helps parents work, increasing employment and labor force participation among low-income mothers. These supports for working families are in line with President Trump’s recent Executive Order on Reducing Poverty in America by Promoting Opportunity and Economic Mobility.

While child care subsidies significantly ease the financial burden of child care and incentivize work, there are so many other ways that states can support parents as they work toward family self-sufficiency.

The 2014 reauthorization of the Child Care and Development Block Grant Act includes a number of new family-friendly subsidy policies, such as supporting job search and gradually phasing out child care subsidies to avoid cliff effects, to help parents find work, stay employed, and increase work hours and wages without losing child care. The law also calls on states to increase the supply of child care for families who might have trouble finding care, including those in underserved areas and those who need care outside traditional working hours. We’re excited about the innovative approaches states are taking to promote work as they implement these new requirements.

Local programs and child care providers can also support parent work and education.  For example, one of our new federal Performance Partnership Pilots for Disconnected Youth (P3) sites in City of New York works with low-income parents ages 17-24 and their children to improve both family and child outcomes. The program uses federal funding from both CCDF and the Workforce Innovation and Opportunity Act to pair guaranteed child care with education and occupational training to improve parents’ work readiness, earning potential, and access to multiple career pathways. In addition to career development, parents are offered early learning workshops that engage parents in their child’s development.

Evaluation of this promising model is underway, and we are excited to learn how pairing child care with work support in this context will influence family self-sufficiency and well-being.

It is encouraging to see many other integrated efforts to foster both child development and family economic security. If you’re a child care administrator or provider, are you partnering across programs to connect families to workforce opportunities? Here at HHS, we’re committed to working across all our programs to help families work and achieve economic stability, and we’d love to hear from you.

NYC P3 provides education/occupational training for young parents with child care for their children

Posted in: Programs for Families and Children
Tagged: self-sufficiency, employment, parenting

How I’m Managing My Chronic Pain Without Opioids

Tessa Frank

Note: This is one of a series of stories by people whose lives have been affected by the use of opioids. Fighting the nation’s opioid crisis is one of HHS’s main priorities.

I lived in Asheville, North Carolina, for most of my life, and up until I was 15, that life was normal. Then at 16, I suffered a minor injury to my calf while playing soccer. The injury caused something called complex regional pain syndrome (CRPS), a chronic, debilitating neuropathic pain condition.

The pain was awful and the condition spread throughout my body. My doctor prescribed the lowest dose possible of an opioid that he thought best for my neuropathic pain. By 17, still under the doctor’s care, I was taking the maximum dosage, and I knew I was becoming increasingly tolerant to the medication.

I never considered myself addicted to opioids nor suffering from a substance use disorder, although I was certainly physically dependent on opioids. I had gone off my opioids once under the care of my doctor to prepare me for other treatment options, and it wasn’t easy. When I weaned myself off opioids another time because I didn’t like my physical dependence on the medication, I followed a similar regime, and again went through withdrawal. Opioids are powerful drugs, and any one dependent on them should work closely with their physician when discontinuing their medication.

My story is perhaps a bit different from others physically dependent on opioids because of my experience working on an opioid public health project as a University of North Carolina at Ashville pre-health intern at Mountain Area Health Education Center.  For my research project, I worked on the Integrated Chronic Pain Treatment and Training Project (funded by the Centers for Medicare & Medicaid Services at HHS), which aimed to reduce the number of opioid overdose deaths in Western North Carolina while still maintaining optimal care for patients with chronic pain. 

This project changed my life. I was in pain all the time and felt frustrated when the prescribed opioids couldn’t control it. But working on the project confirmed to me that I wanted to find ways other than increasing doses of powerful opioids to manage my condition, as well as to help others with chronic pain.

While I no longer use opioids, I do use non-opioid prescription medications and a spinal cord stimulator to provide pain relief for my CRPS.  I’m also hyperaware of how stress triggers my increased feelings of pain, so to mitigate stress, I personally have found relief in meditation, relaxation and yoga among other approaches.

I am now working on getting a PhD in neurobiology at Heidelberg University in Germany. My research focuses on the mechanisms of chronic pain. I am doing this because I know that there is a need for better non-opioid management options for chronic pain.

Because of my experience, I can see why we need to control the overuse of opioids while still making sure they are available when necessary to help people manage their pain.

My whole life revolves around chronic pain. I can either moan and groan about it or turn it into something bigger than myself.

For information about opioids and pain management, see  https://www.cdc.gov/drugoverdose/prescribing/guideline.html.

If you or someone you know has a problem with heroin or the misuse of opioid-based prescription pain relievers such as oxycodone (OxyContin), hydrocodone (Vicodin), codeine and morphine, call the National Helpline at (800) 662-HELP (4357) or visit http://findtreatment.samhsa.gov to find the nearest treatment facility.

The Opioid Overdose Prevention Toolkit and other resources can be found at https://www.samhsa.gov/homelessness-programs-resources/hpr-resources/useful-resources-opioid-overdose-prevention

Posted in: Opioids
Tagged: opioids series, pain management

Helping Older Adults “Engage at Every Age”

May is Older Americans Month, a time when we recognize the contributions of older Americans and think about how we as Americans work together to support and value people over age 65. The theme this year is “Engage at Every Age.”

Research suggests that seniors who are socially engaged are also healthier, mentally and physically. That’s why the Administration for Community Living is committed to supporting older adults with the tools and services they need to continue to engage in their communities throughout their lives.

Through the national aging network, which includes thousands of agencies and organizations in every state, and with the help of advocates and partners from both the public and private sectors, ACL is working to connect older Americans and their families to the systems of services and supports available to help them remain healthy, live independently, and prevent abuse and neglect, as well as support caregivers. We’re also working together to expand employment opportunities for older adults who wish to work. 

One of our best-known programs is the home-delivered meals program, which is operated in partnership with states and communities. Each day, across the country, volunteers of all ages and backgrounds deliver more than 900,000 meals to older Americans at senior centers and in their own homes.

Today, I had a chance to be one of those volunteers. I accompanied HHS Deputy Secretary Eric Hargan on a trip to deliver meals along with staff from Meals on Wheels of Takoma Park/Silver Spring. With a staff of two and a volunteer corps of 60 strong, the organization cooks up and delivers more than 20,000 meals each year. It’s one of more than 5,000 community-based programs that provide meals to more than 2.4 million seniors in virtually every community in America.

These meals offer more than good nutrition. According to a recent evaluation conducted by ACL, 90 percent of people who receive home-delivered meals report that the program helps them live independently. In addition, the meals programs also provide an important link to other home- and community-based services, such as homemaker services, transportation, home repair, safety checks and activities that improve health and quality of life.  Together, these services help people live independently in their communities – instead of in far more expensive residential facilities like nursing homes.

ACL was created around the fundamental principle that all people, regardless of age or disability, should be able to live independently – and to “Engage at Every Age,” throughout their lives. The nutrition programs created by the Older Americans Act play a key role in making that possible for millions of people. People like those we met today.

I can’t think of a better way to kick off Older Americans Month!

Posted in: Programs for Families and Children
Tagged: Americans, Meals on Wheels

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