Faith, Persistence Triumph Over Ignorance of Detractors

In the book Doctors: Bound by Secrecy? Victims: Bound by Pain!, Karen Steward shares the painful journey to find help for her daughter, Melissa. You can find inspiration in this book if you have ever struggled to conquer any confusing, painful illness.

Though the book is uplifting, be prepared for other emotions that may surface as you read. I stopped reading near the beginning and couldn’t continue for quite awhile. Karen’s honest accounting of her trials broke open the emotional wounds I still carried from my own battle with illness. Only someone who has been there can understand how unloving some “loved ones” can be, how unprofessional some “professionals” can be, and how unchristlike some “Christians” can be toward a person who is hurting so badly.

But the book is not a pity party in print. Karen helps you laugh through the tears as she calls upon real faith to find solutions for her daughter’s adhesion related disorder (ARD). This heartfelt story just might inspire you to do the same for your own illness.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Fear Mongers Won’t Stop Health Care Reform

They’re at it again. The fear mongers who have few positive ideas to contribute to the debate are rounding up a posse to take shots at the health care reform train. The internet is the latest weapon in their arsenal.

In addition to the blogs that seem to multiply like gerbils, a friend forwarded an email from an unknown source. It was based on a blog post by Betsy McCaughey that appeared on Bloomberg.com. McCaughey is an adjunct senior fellow at the Hudson Institute, a non-partisan policy research organization supposedly dedicated to innovative research and analysis.

McCaughey’s post criticizes the section of the stimulus bill that establishes a Federal Coordinating Council for Comparative Effectiveness Research. This council will pinpoint treatments that are most effective.

McCaughey claims the council’s work will lead to limitations on treatments for serious illnesses and shift funding toward younger patients. Her post fails to mention the $1 billion set aside for prevention and wellness programs, which should reduce the need for expensive treatments by preventing disease. The bill channels an additional $8.2 billion into research to find cures.

The Council has not been granted authority to establish guidelines for private or public plan payments or coverage. It will establish a database where professionals can easily access the latest information. McCaughey seems unaware that proven treatments often take several decades to reach the consumers who desperately need them.

Now the email I received is spreading claims that Democrats want to ration health care for the elderly and that those efforts need to be stopped. Doesn’t the author realize we’re already rationing care for everyone under the current system? The list of doctors who won’t take new Medicare patients in my area seems to grow daily, and out-of-pocket expenses are rising for everyone, including Medicare recipients. How many people do you know personally who can afford the care they need, with or without insurance?

Every health care consumer in this country, whether satisfied with the system or not, should watch the film Critical Condition, which aired on PBS last year. It highlights the struggles of four people whose lives were totally disrupted when they couldn’t afford the care they needed.

The story I will never forget followed a man who opted to have his foot amputated so he could return to work before he lost his benefits. He thought the treatment his doctor preferred would take too long. When his recovery period was longer than expected, he lost his job anyway, and the insurance company retroactively denied his claim for a prosthesis. He was forced to have his ill-fitting temporary prosthesis repaired after it broke because he couldn’t find work. He received severance pay and found a new job after a year, but was concerned that his new employer’s insurance would not cover a pre-existing condition.

Most of the people I know have experienced some nightmare in the system or know someone who has. Health professionals, insurers, advocates, business leaders, and patients agree that change is inevitable.

The fear mongers won’t succeed this time. The question is no longer if but when and how.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Health Care Reform Train Moves Forward

With several key announcements this week, the words and actions of President Barack Obama show he understands the economy will never recover without health care reform. He also understands the public must be educated about the urgency of needed changes.

The president touted today’s health care summit as a step toward creating a bipartisan consensus on workable solutions that address the concerns of everyone involved. More than 150 leaders in politics, labor, and business, joined representatives of doctors, hospitals, insurance companies, and consumer organizations. Kentucky Senator Mitch McConnell delivered a letter to the president that stated even Republicans are willing to consider reforms that don’t include establishing a single-payer system. Democratic Governor Kathleen Sebelius of Kansas, the president’s nominee for Secretary of Health and Human Services (HHS), has the skills to keep the momentum going.

Earlier this week, when the president announced Sebelius as his choice, I thought he had made another mistake in this area. His initial pick, Senator Tom Daschle, withdrew because of problems with his taxes. Sebelius was unsuccessful at attempts to provide coverage for the residents of her state.

But in spite of a Republican-dominated legislature, who feared the cost of expanding state insurance coverage and blocked her efforts, Sebelius successfully initiated major and minor changes that put the needs of consumers first. Those changes included standing up to HMOs that interfered with private medical decisions and helping senior citizens save money on prescription drugs. Prior to her election as governor, she became the first insurance commissioner in the nation to deny a takeover of her state’s Blue Cross/Blue Shield program by a for-profit health care conglomerate. The state has also expanded preventive care for several at risk populations during her tenure.

With the help of Nancy-Ann DeParle, who now heads the White House Office of Health Care Reform, Sebelius may be able to get the job done. DeParle brings experience with a wide variety of health care issues facing citizens, businesses, non-profit organizations, and government at the state and national levels. Among other positions, she served as director of the Health Care Financing Administration (HCFA) and as representative for health care reform in the Office of Management and Budget (OMB) during the Clinton administration. Especially important is her experience with serving the poor as commissioner of the Tennessee Department of Human Services.

Earlier this week, President Obama announced plans to address the needs of the nation’s uninsured. His budget includes $155 million for 126 community health centers around the country to provide care for approximately 750,000 people and create up to 5,500 new jobs. The centers will provide mostly primary care and preventive services, which will reduce the number of taxpayer-financed emergency room visits for non-emergent conditions.

But recent reports show that 87 million Americans went uninsured in the last two years. That’s up from the widely-reported figure of 47 million because so many people have recently lost coverage along with their jobs. Some experts say the number is growing by 14,000 each day. This lack of access to care will cost the nation even more as those people become disabled by conditions that could have been prevented by early intervention.

If the health care reform train doesn’t continue to move forward, it could easily derail all other plans to get the national and world economies back on track.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Bredesen Could be HHS Secretary – CORRECTED

Updated 2/11/09

The rumor mill is circulating with possible names for the new Secretary of Health and Human Services (HHS). Among those names is Tennessee’s Democratic governor, Phil Bredesen. Despite what Republican opponents and MoveOn.org say about the matter, he would be an excellent choice.

Bredesen knows what it’s like to insure a large population of unhealthy people who have low incomes. He understands the needs, and he has found a way to provide coverage with little support from the federal government and much opposition from state Republicans and idealistic health advocates.

When faced with cutting scores of chronically-ill patients from the rolls of TennCare, the state plan for the poor and uninsurable, Bredesen flew to Washington more than once. The past administration denied his repeated requests for changes to the Medicaid waiver that covered the plan.

Around that time, some Republican candidates for the state legislature openly campaigned and won seats on a platform of reforming the plan. They claimed it was rife with fraud and blocked Bredesen’s efforts to change and save it. The office that investigates such matters has since found little evidence to support those claims.

Republicans and health care advocates, who didn’t understand the big picture and refused to compromise, then smeared Bredesen’s name in the press and blamed him for the cuts when voters who lost their coverage became angry. But Bredesen was faced with competing challenges. He faced those challenges as total federal contributions to the state budget decreased.

Health care costs in Tennessee were taking money that was needed for education and other priorities. Bredesen understood that a person with a good education could afford private insurance or get one of the few jobs that still offered a group plan. He used the money he saved to expand pre-kindergarten programs in the state.

He also understands that education is important because the good jobs of today require highly-skilled workers. Having more workers with good jobs expands the tax base that is needed to support vital services and lowers the tax burden for all.

Tennessee has lost many of the manufacturing jobs that supported middle class families in the last few decades. Most of those jobs have been replaced with low-paying jobs in the service and retail sectors that don’t offer health insurance.

Governor Bredesen has personally experienced the high cost of not having insurance. His own brother died because he was uninsured. Since then, Bredesen has created a plan to cover the people who were cut from TennCare with a combination of public and private funds. Additional plans cover small businesses, children, and those who have lost their jobs.

Before the current economic crisis, Bredesen did all these things with a balanced budget and without raising taxes. Like everywhere else, sales and property tax revenues have plummeted.

Tennessee also doesn’t have a state income tax. Republicans almost incited a riot the last time Democrats tried to enact one.

Republicans once again distorted these and other facts and took advantage of low information voters (LIVs) to gain control of the state Senate in the last election. They are one vote short of controlling the House. Republican Deputy Speaker of the House Steve McDaniel has openly admitted that funding services in the current situation will be the most challenging task he has faced in his entire tenure in the legislature, and he doesn’t know where to start.

Governor Bredesen deserves the nomination. He’s a big boy who knows how to get the job done in a hostile political climate like the one in Washington.

An earlier report stated that Republican Tennessee State Senator Steve McDaniel was Speaker Pro Tem. He is Deputy Speaker of the House, and soon may be named temporary speaker. The speaker, Independent Kent Williams, is away tending to his sick mother, and the Speaker Pro Tem, Democrat Lois DeBerry, is recovering from an unspecified illness.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Daschle Withdrawal Won’t Stop Health Reform

Tom Daschle’s withdrawal from the process to become Secretary of Health and Human Services (HHS) won’t stop the health care reform train. That train left the station long before President Obama tapped the former senator to become the conductor.

The feedback Daschle received as he met with concerned citizens across the country underscores the urgency of the situation. Everyone is tired of supporting a system that doesn’t work.

The system doesn’t work because the way we live doesn’t support good health. Stress-filled lives that limit time for healthy practices are causing an epidemic of chronic illnesses that is bankrupting the system and those who depend upon it.

Spiraling costs will undermine the effects of the stimulus if we don’t implement a practical plan for addressing these issues. The head of HHS and/or the White House Office of Health Care Reform must understand what practical steps we need to take.

Joseph E. Pizzorno, Jr., founding president of Bastyr University, is uniquely qualified to develop such a plan. Students at Bastyr receive training to address the whole person, not the just the disease.

During Pizzorno’s tenure as president of Bastyr, the university received funds for alternative medicine research from the National Institutes of Health. He was appointed to the White House Commission on Complementary and Alternative Medicine Policy by President Clinton and to the Medicare Coverage Advisory Committee by President Bush.

Pizzorno’s experience makes him uniquely qualified to work in an administration committed to major changes in public policy. If he is not willing or able to serve, he may know a colleague who is. Click here to read more about his accomplishments.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Angry No More

Update to a post that first appeared on this blog on 8/26/07

Resentment has driven my life during most of the last 20 years. The main cause: trying to find help for a chronic illness, a disease that develops slowly and lasts a long time. Our medical system is unmatched in its treatment of acute illness, which starts suddenly and lasts a short time. Medical professionals just began to understand the difference about 10 years ago.

My struggles have taught me to believe that “all things work together for good to them that love God, to them who are the called according to his purpose.” (Romans 8:28) Love for my mother and for friends who also suffer from chronic illnesses drove me to seek solutions for these problems. The solutions have improved the quality of life for me and my loved ones.

During the search I developed skills to pursue a career as a consultant in chronic disease prevention, research, health policy, and communications. If things go as planned, I hope to complete online graduate degrees in nutrition and epidemiology. Epidemiology is the study of what causes diseases, how they are distributed, and how to control them in populations.

As hard as I’ve tried to making this decisions, I can’t do it. I’m a geek who reads nutritional biochemistry for fun.

My heart has ached more than 30 years since my family convinced me to abandon a dream of doing biochemical research. Poor laboratory skills, inability to set goals and establish priorities, an overloaded schedule, personal problems, and the health problems that resulted from all the stress convinced me they were right.

Most of those problems have been resolved since then. The steps outlined in The 7 Habits of Highly Effective People, by Stephen Covey, have taught me to set realistic goals and plan my schedule more effectively.

Understanding of the human body has progressed in my absence from the world of science. Much of the basic information I need is available for online study and practical application.

Since my early days in college, I’ve believed that health care would move in this direction. Communication skills developed during the fight for my health will help me convey those beliefs to a broad audience.

I have a moral obligation to share what I know with people who need my help. The Obama administration’s support for preventive care gives me hope that my work will not be in vain.

This is a chance to stop complaining about the health care system in this country and do something about it. Money is the biggest obstacle. Because God has resolved so many complicated situations in my life, I know that won’t be a problem. “All things are possible to him who believes.” (Mark 9:23)

Until then, I’ll continue blogging, writing books, and pursuing related opportunities in the hopes of making enough money to survive during my studies.  These dreams have provided a positive outlet for my anger, and I am angry no more.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Bill Promotes Economic, Physical Health for All

I never knew public policy could be so much fun. The summary of the American Recovery and Reinvestment Bill of 2009 that passed the House of Representatives is more exciting than any of my favorite movies.

This bill shows an amazing grasp of the complexities of the current economic crisis. It addresses immediate needs and makes a down payment on long term goals while reducing the stresses that can lead to chronic illness and higher health care costs in the future.

Implementation of this bill could substantially reduce entitlement spending in several areas and reduce the burden for all taxpayers by addressing the following issues:

• The increases in food stamps and food services for the elderly will promote better nutrition to reduce health care costs
• Vocational rehabilitation and public service opportunities will allow the disabled and the able seniors to reduce their reliance on public aid
• Increases in unemployment insurance, Medicaid, and COBRA insurance for those who have lost their jobs will help them meet basic needs, maintain their health, reduce costs associated with advanced stages of disease that result from lack of treatment, and preserve some jobs in the retail and health care sectors
• Funds for job retraining, work study, Pell grants, and research will prepare the country and its citizens for the jobs of the future
• Infrastructure projects and loans will create new businesses and help existing ones retain current employees and hire displaced workers from the housing and auto industries and other sectors who have transferable skills
• Green jobs will create a healthier environment and reduce the pollution that contributes to chronic disease while reducing the need for assistance with energy bills
• When basic opportunities are available and basic needs are met, expenses for the criminal justice system are reduced.
• Funds to train primary care workers will avert the consequences of a shortage when they will be needed to provide care that reduces the cost of chronic diseases
• When basic opportunities are available for the strong and basic needs are provided for the weak, fewer people enter the criminal justice system and related expenses are reduced

The bill reduces waste by utilizing public and non-profit organizations that are experienced in meeting the challenges we face and have accountability procedures in place. It also preserves jobs in those sectors and provides protection for whistleblowers who wish to report fraudulent use of taxpayer dollars.

By providing economic opportunities for a broader cross-section of society, this bill can broaden the tax base, help reduce chronic illness, and reduce dependence on entitlement programs. That can lower the tax burden for all if coupled with a more judicious use of military force. The financial sector will only return to health when the people can afford their services.

The Republican response to the bill is an example of why they don’t need to be in charge of the country’s business anytime soon. Their ideas are based on the myth that everyone can pull themselves up from their bootstraps. They don’t understand the impact of unfair public policy on average citizens. Unless they gain an understanding of the issues that face common people, they will remain the party of a vanishing breed: people who are actually thriving under their policies.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Use Multiple Sources for Caregiving Help

Middle class families usually don’t qualify for much help with caregiving. Home health agencies teach you how to do your part more efficiently. That won’t help if there aren’t enough people in your family or hours in the day to perform necessary tasks.

The rules for additional help don’t usually make allowances for real life circumstances. If all members of a family of three have chronic illnesses, they may need more assistance.

What do you do if you need and don’t think you qualify for help? Where can you turn if placing your loved one in a nursing home isn’t a wise option?

The first place to turn is your Area Agency on Aging. The staff may know about resources in your area. You may not qualify for much, but a few hours of housekeeping and respite care are much better than none.

Next, spend some time searching your budget for ways to trim household spending. This may yield enough money to hire additional help for a few hours each week.

Though friends and family may be too busy to help with remaining tasks on a regular basis, most will have a few minutes or hours here and there. Keep a list of everyone who volunteers to help and what they are willing to do. Some may be able to help with specific tasks for short periods on a regular basis. Others will be willing to help during emergencies.

When people say they are willing to help, take them at their word. You’ll ruin your health if you try to do everything by yourself.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Health Care Changes are Within Our Grasp

Tears filled my eyes as I watched the inauguration of Barack Obama. At last there is a friend of the chronically ill in the White House.

If you’ve attempted to get help for a chronic illness through our dysfunctional health care system, you know that help can be hard to find. When you find it, you may not be able to afford it.

Those who doubt the new president’s ability to lead us toward reform have forgotten these important factors:

• He understands the issues
• He has proven his ability to communicate his vision for change to people with conflicting views
• His choice to lead health reform, Tom Daschle, is a seasoned politician who understands the complex nature of the challenges ahead and has hit the ground running
• Insurers, medical professionals, and consumers alike are aware that the system will collapse without radical change

The legislators who won this past election are well aware that they no longer have the luxury of taking our votes for granted. There are more voters in this country than lobbyists in Washington.

We can can see many of the changes we need in our lifetime. If we continue to pressure our leaders to work toward creating a system that works, and support those who have workable ideas and clear vision, we can see those changes sooner rather than later.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

Request Skilled Therapy Before Leaving Hospital

Updated 1/16/09

If your loved one has been admitted to a hospital and needs skilled nursing therapy to regain some independence, make sure you inquire about it before you leave the hospital or soon afterward.

Medicare only allows admission to therapy within 30 days of a related hospital stay. There is no other legal way to receive this type of care through Medicare.

Though many people may tell you otherwise, there are two reasons why you shouldn’t try to fake an emergency to have your loved one readmitted to the hospital if your situation doesn’t fit within the rules. The first reason is you could be charged and convicted of Medicare fraud. The second is this country is in enough financial trouble right now without paying for unnecessary hospital bills. That money could be spent on care for your loved one.

If your situation falls outside the guidelines, pray about what to do next. You may also be able to find other options in your area if you call around.

To prevent facing this situation at all, make sure you read the latest Medicare rules if you haven’t already. Though keeping abreast of those rules may seem like an inconvenience, lack of understanding may someday hurt your loved one. It may also waste the government’s money and even more of your time and energy.

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Jacqueline Laurette Jones is author of Unmasking a Diagnosis: How to get Help for a Confusing Chronic Illness Without Filing for Bankruptcy.

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