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Newsletters: Shaping the Future of Your Health Care
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Shaping the Future of Your Health Care

Mary Patnode, HPN Consumer, Regional Coordinator

Eleven years ago I had the opportunity to remark on the same subject at the second Oley Conference -- the impact of reimbursement issues on the lifestyle of long term HPN consumers. At that conference I was a six-year veteran of HPN. My concerns were related to preserving my private insurance coverage under a lifetime maximum. In the intervening years while much remains the same, much has also changed.

In 1986, we were happy to have over 100 persons at the conference, including family members, guest speakers and industry representatives. In the intervening years, the Oley family has increased greatly and the growth in technology has accompanied the growth in HPN consumers. This year, I am told, we have just over 300 conference attendees. When I traveled to that conference in Saratoga Springs, I carried an IV pole and a large, heavy pump with me as I flew back and forth to Minnesota. I had only recently given up mixing my own solutions at home. Receiving a shipment of HPN was much more of an event when one is receiving all the raw ingredients in glass containers and the tubing, vials and syringes for mixing as well as the supplies, tubing and syringes for administering the finished product. I believe there were two catheters commonly available and the Porta-Cath was just beginning to be used.

Today my HPN arrives premixed according to much finer specifications and it is mixed in much more sterile conditions. I use a small hand held pump, a battery and a backpack, and my supplies fit into a compact case which easily fits into an overnight bag. There are not only a wider variety of catheters, there are also more access methods for placing lines and we know much more about preserving those lines. Solutions are capable of addressing individual nutritional and disease related requirements. Life is good!

As I prepared my remarks for this morning, I realized that the group I am with at this year’s conference is much more sophisticated. It is a group of strong self-advocates. It is also a much larger group, and as our numbers have grown, we continually benefit from the experiences that each consumer brings to the conference.

I have now been on HPN for 17 years. During those years I’ve adapted and changed as advances in medicine and technology have offered more understanding of my needs and greater advantages to my overall health and lifestyle. In comparison to 1986, living with HPN is far less restrictive. The issues addressed at this conference go beyond questions of immediate survival and whether or not HPN consumers can participate in work or recreational activities. We are now addressing questions of long term survival, oral nutrition, and reducing and sometimes eliminating dependency on HPN through carefully constructed diets. Consumers talk of career goals, pregnancies, cruise ship vacations and international travel.

During these past 17 years, I’ve seen all of these advances in medicine and technology evolve in the midst of, and sometimes in spite of, a very different health care and insurance industry climate. I am not an expert on either health care or insurance, however, I have by circumstance, become familiar with both industries. I have listened to many consumer stories and I have learned from each of them. My comments today reflect a few of the challenges I hear replayed many times.


The Switch to Managed Care

The health insurance industry has changed and its impact on health care is already evident. The insurance industry has become one of the primary players in determining whether people will receive the care their doctors have recommended, and if so, how much of that care and for how long. In some parts of the industry, cost containment has become the standard of medical practice rather than overall well-being or quality of life. Insurance companies now own hospitals. Doctors are asked to order tests and suggest treatments based on protocols determined by the insurance industry rather than their physician. Patient choice of physician is limited to those within their medical insurance plan and in some cases, patients are assigned to a physician eliminating choice altogether. Health Maintenance Organizations have become the vehicle be which the industry can administer medicine to large numbers of persons more cost effectively. However, these large groups are most proficient at doing only what their name implies, maintain health. When faced with patients with major and chronic health problems, they are ill equipped to provide the kind of specialized and frequent care that HPN patients tend to require.

In some cases, the HMOs not only own the hospitals, but also the home care company supplying HPN solutions and supplies. I know of several instances in which consumers would like to receive their services from a specific HPN home care provider in whom they have confidence. However, they have been required to change providers to the company owned by the HMO in order to receive insurance coverage. This does not necessarily mean that the service provided by the HMO owned company is less expensive. In some cases it actually costs more of the consumer’s lifetime benefit dollars.

A consumer I spoke with recently was required to change home care providers when she changed insurance companies. The new insurance company-home care provider partnership determined that they would cover her HPN but they would not pay for her to have a portable pump. They were only willing to provide her with an IV pole and a pole mounted pump. Quality of life and physician recommendation were not part of these decisions. Cost containment was the issue and by insurance company standards her medical needs could be justifiably met with a pole mounted pump. In order to keep her pump, she would pretend to not be home whenever the original home care provider arrived to pick up her ambulatory pump. She was lucky that her situation was later resolved by her receiving a free pump. The insurance company eventually decided that they could cover the cost of administration sets in exchange for not having to provide any pump at all.


Private Insurance Issues

Private insurance companies tend to offer more freedom of choice within a larger network of preferred providers. However, HPN consumers need to belong to large groups in order to receive private insurance company benefits. Small groups are not able to absorb the cost of the HPN consumer’s needs. One HPN consumer that I know of, and there are surely many more, quickly used up the relatively limited maximum lifetime benefits offered to the small group to which she belonged. She has had great difficulty locating another group and is not eligible for an individual policy. Many larger groups are employment based opportunities and therefore not always available to consumers who are not able to work or able to work only part time.

However, even private insurance companies are becoming involved where they have not been involved before, such as setting rates for services that they will cover and as a consequence determining the amount of services a consumer may receive. In one example, the cost of HPN was determined by a large insurance company to be at such and such a rate per day. The company then negotiated all contracts with providers in their network at that rate, no more, no less. HPN expenses for some consumers were actually significantly increased by the insurance company. And as a consequence, the amount of benefits and the length of time those benefits will continue under a lifetime maximum are decreased.


The Disadvantage of Disability

Becoming eligible for disability insures that HPN will be provided and paid for but does not answer all the questions for the HPN consumer. I’ve known several consumers who have become eligible for disability benefits. When their health improved, however, they needed to continue with disability because they were dependent upon it for their HPN coverage. They felt that they were caught in a bind, if they used their talents to officially work, they might lose their disability benefits. If they don’t work, they lose the benefits of participating in the work world and making financial contributions to their family and to their own sense of independence and self esteem. I’ve known several talented consumers who are able to work part time but must insist on cash payment for work in order to avoid reporting it as income.

Two couples that I know of have decided against getting married because one partner is self employed and the other is on HPN and receives disability benefits. They can’t risk the possibility that the HPN consumer may lose their disability insurance if they become legally married. Another HPN consumer had four young children and her husband owned a small, independent business. The business had a small group insurance policy with a relatively low lifetime maximum benefit. Once HPN exhausted that lifetime maximum, the family business and the future security of their children were threatened. One of the solutions considered for she and her husband was to get a divorce in order to separate their assets. As a divorcee, the wife could be considered for Medicare without threatening the family’s financial resources.

In Minnesota, persons receiving Medical Assistance (for reasons of disability or because of low income) may soon be required to choose a Health Maintenance Organization as a subcontracted insurance provider. If this happens, they will become limited to the physicians and providers within that HMO network and lose access to the specialists whom they trust and rely upon for quality care.

Another situation which reflects both the success story that HPN can mean for some people and the dilemma of disability and insurance was relayed to me when I listened to parents of children on HPN express their concerns about their children’s future. Their question was, “What lies ahead for my child when they can no longer be covered by my insurance policy. I want them to be all that they can be. What choices will lie ahead for them?”


Moving Forward Responsibly

Now that we have progressed from frontier breaking survivors into sophisticated informed consumers, there continue to be issues each of us need to address as we cope with the realities of our personal situations. I was disappointed when I heard a consumer say, “I don’t worry about how much HPN costs because I’m on disability and it’s all paid for.” We all must be concerned about how our health care resources are used. There is a climate of conservation that is part of the current national debate on health care. Each of us is an expensive proposition no matter what our insurance or health care situation might be. We must not apologize for our quality of life concerns or the unique needs of our health care situation, but we should also not be reckless in our attitude about our resources.

As health care costs continue to receive national scrutiny, it is my opinion that we will each need to be vocal about our quality of life concerns and responsible in our use of the health care dollars we have for our personal resources. We need to express our concerns to our political representatives on a local and national level. The changes in how we view health care privileges are already occurring and we will want the concerns of those of us with chronic and expensive needs taken into account as the national debate continues.

My wishes at this conference are that: One, we will all become participants in the process by which our health care privileges are reviewed in this country; two, medical science and technology will continue to contribute to our quality of life; and three, the next ten years will bring as many advances as has the past ten years.

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.


Updated in 2015 with a generous grant from Shire, Inc. 


This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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