Tag Archives: Chronic Illness

The Last Day of School

Yesterday was Alexa’s last day of school. It was a bittersweet day that Alexa both looked forward to and dreaded.

When Alexa’s Dad died 2 years ago she wrote and read a tribute at his funeral, a good-bye letter if you will. In her letter she said that she feared the big days ahead, like graduation and someday getting married. She said that the milestones in her life would be marked by his absence.

Alexa made it clear to me that she would not walk in a graduation ceremony afraid she’d be reduced to tears and throughout her last year of high school I wondered if she’d graduate at all. She struggled with chronic illness related immune deficiency and she grieved over lost health and a lost father. Her grades fell.

Her greif counselor told me not to push her and sometimes I didn’t, and sometimes I did. I knew if Alexa didn’t graduate that she was still an able, capable girl, even more important Alexa knows she’s an able capable girl. But I was afraid if she gave up on graduation that it would give her more of a reason to give up on life. Alexa and I discussed our terms, she agreed to follow through with earning the credit needed to graduate and only said, “just stay with me,” and so I did.

Finishing class yesterday reminded her that she couldn’t call her Dad to say, ” I did it Dad,” but she imagined what he might  have said and how proud of her he would have been.

After her online classes ended at noon we loaded into the car and left for the suburbs of Minneapolis. Nick had a new car to pick up and Alexa and I made plans to visit Cookie Strange at Great Clips in Champlin.

Cookie is one of my closest friends, daughter. I’ve known Cookie ever since she was born and her Mother named her Emily…which she later changed to Cookie. Cookie works magic on hair and I will follow her to the end of the earth because she makes my hair fabulous.

The last time I got my haircut I had it done locally, it is viewable in all of my online photos. The cut was alright but it wasn’t the kind of cut that you could blow dry and go and it didn’t fare well on windy days in the garden. I need hair that you can seriously mess up and I prefer an modern edge because age appropriate just sucks,  as always Cookie delivered.

When Alexa and I finished getting our hair cut we went to Totally Tan. As Alexa’s health has worsened her skin color has become very light but her hair is dark. During the summer she frequently hides in jeans feeling like her legs glow white. She also burns easily so I agreed to take her to a place that offers a full body spray tan.

After I paid for Alexa’s tan, Alexa looked at me and said…”Aren’t you going to go?” I hesitated, I have  to attend a birthday party and a wedding today…but thought I could use some color. After asking a pile of questions I decided to try it. The experience was absolutely dreadful, it so cold it almost took my breath away and I forgot to use the shower cap so I stepped out once again feeling like Bridget Jones.

On the drive home Alexa and I talked about her Dad, upcoming graduation parties, what to wear to the wedding and we started to turn a warm brown …maybe not so bad. By this morning I staggered to the kitchen for coffee on gingerbread colored legs and thought; definitely not bad.

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Filed under Books, Cooking, Education, Fiction Writing, General, health, Life, Minnesota, Minnesota Fiction, Politics

Autism, Health Care Twitter Day:My Thoughts as Nick and Alexa’s Mom

Autism and Health Care Twitter day December 23rd all day.

A video should appear in this spot but because I’m posting this in WordPress it doesn’t appear to be working so, here is a link instead.

Click here  to log on to my Lost Marbles website on Blogger to have access to this post complete with video.

Before I launch into my thoughts on Health Care I’d like to introduce my son Nick and my daughter Alexa. Nick suffered a shot reaction as an infant and has Aspergers and Alexa has been sick since…forever. Also referred to as Bubble Girl, Alexa has no immune system against common illnesses, a disorder that took over 16 years to diagnose and only after I forced a referral from the iron fist of our local clinic. Specialist are currently looking into the possibility that Alexa may also suffer from Lupus.

Currently, Alexa is 18 and attends Blue Sky Charter school, an online high school and will graduate in the spring. Alexa plans to attend college in the fall of 2009 and major in Asian studies.

Nick is completing his second year at Central Lakes Community College and plans to transfer to Augsberg University where he will major in Space Physics.

As a mother who raised 3 children, 2 with special needs in a single parent household I have many thoughts regarding health and preventative medicine. Also on the effects of the many pollutants that taint in our food supply, our water and our air including those approved by the FDA. In the interest of time I will only address the issue of Health Care in this post but hope that the Obama administration takes a GIANT BROOM and cleans up government agencies like the FDA. The words, Approved by the FDA should actually means something to the American people.

Despite its original publication in 2006, Public Citizens list of arguments in favor of a Single Payer System are still valid. Since portions of the original publication were relevant to activities taking place in 2006, I am posting portions germane to the current question.

July 28, 2006 – The rationale for single payer has become increasingly compelling right now, when U.S. businesses are feeling the pinch of rising health care costs, the number of uninsured continues to rise, the nation is losing its comparative advantage in world markets, hospitals are eager to shed the burden of their “bad debt and charity” pool, and consumers are increasingly baffled by an array of insurers who offer confusion in the guise of “choice.”

The main argument in favor of a single payer is that such a system is the only way we can realistically afford to end the dangerous, embarrassing, and worsening situation wherein about 45 million people in this country lack health insurance and millions more are seriously uninsured. In addition there are a number of practical reasons for having a single payer; these are summarized below.

Single Payer is good for business. Publicly financed but privately run health care for all would cost employers far less in taxes than their costs for insurance. With universal coverage, employers would no longer have to pay for medical care as part of the compensation package offered to workers. And with health care outlays expected to increase between 14 percent and 18 percent between now and 2010, employers can expect no relief from the already unsustainable situation they are facing at present. A survey of senior-level executive in Detroit found that 75 percent consider employee health insurance “unaffordable,” while the remaining 25 percent consider it “very unaffordable.”

If the situation is untenable for individual employers, it is even worse for the economy as a whole. Increases in health care costs are a drag on economic growth: they thwart job growth, suppress increases for current workers, weaken the viability of pension funds, and depress the quality of jobs. Rising health care costs are also causing budgetary problems for federal and state governments, which are currently paying over 50 percent of the U.S. health care bill.

Universal health coverage would also have a salutary effect on labor-management relations. Many if not most strikes in the past five years have involved conflicts over health benefits. Universal coverage would defuse this contentious issue, provide benefits independent of employment status, and allow business greater flexibility in whom to hire.

Single Payer will enhance the comparative position of the U.S. in the global market. President Bush has repeatedly said that the United States is not reluctant to compete on the international market as long as there is an even playing field. At present, the lack of universal health insurance places the U.S. at a disadvantage vis-à-vis other countries. Companies such as General Motors that have factories in both the US and other countries have learned this lesson well; for example, in 2003 the costs of manufacturing a midsized car in Canada were $1,400 less than that of manufacturing the identical car in the US, primarily because of much higher health costs in this country.

Single Payer builds on the existing experience. Those who fear that single payer is new and foreign, and therefore untested, need to be reminded that Medicare is, in essence, a single payer system. For those who are eligible, Medicare is universal and identical, not means-tested, and administered by the government, which acts as a single payer for hospital and outpatient physician services. Because it did not have to sift and sort the population or cope with a layer of insurers, the rollout of Medicare in 1966 was amazingly smooth. Practically overnight—and without computers— the program covered services provided by 6,600 hospitals, 250,000 physicians, 1,300 home health agencies, and hundred of nursing homes. By the end of its first year, Medicare had enrolled more than 90 percent of eligible Americans, a feat that cemented its popularity and redeemed President Johnson’s faith in the efficacy of government.

In contrast, Part D of Medicare, which departed from the single payer model and introduced private insurers, encountered the wrath of consumers who were unable to maneuver the complicated choices required to obtain prescription drug benefits.

Single Payer has significantly lower administrative costs. Studies by both the Congressional Budget Office and the General Accounting Office have repeatedly shown that single payer universal health care would save significant dollars in administrative costs. As early as 1991, the GAO concluded that if the universal coverage and single payer features of the Canadian system had been applied in the United States that year, the total savings (then estimated at $66.9 billion) “would have been more than enough to finance insurance coverage for the millions of American who are currently uninsured.” More recently, estimates published in the International Journal of Health Services conclude that “streamlining administrative overhead to Canadian levels would save approximately $286 billion in 2002, $6,940 for each of the 41.2 million Americans who were uninsured as of 2001. This is substantially more than would be needed to provide full insurance coverage.” At present, the U.S. spends 50 percent to 100 percent more on administration than countries with single payer systems.

Single Payer facilitates quality control. Having a single payer system would create for the United States a comprehensive, accurate, and timely national data base on health service utilization and health outcomes. This would provide information on gaps and disparities or duplication of care, thereby serving as valuable intelligence for decision-making and resource allocation. At present, the closest analogy to this is the Veterans Health Administration (VHA), which has been highly successful in containing costs while providing excellent care. The key to its success is that it is a universal, integrated system. As Paul Krugman has written in an op-ed piece in The New York Times: “Because it covers all veterans, the system doesn’t need to employ legions of administrative staff to check patients’ coverage and demand payment from their insurance companies. Because it’s integrated, providing all forms of medical care, it has been able to take the lead in electronic record-keeping and other innovations that reduce costs, ensure effective treatment and help prevent medical errors.”

Single Payer gives the government greater leverage to control costs. A single payer would be able to take advantage of economies of scale and exert greater leverage in bargaining with providers, thereby controlling costs. Recent experiences with both the VHA system and Medicare Part D indicate the difference exerting such leverage can make. The Department of Veterans Affairs uses its power as a major purchaser to negotiate prices with pharmaceutical makers. But when the legislation leading to the drug prescription plan (better known as Medicare Part D) was passed, Congress explicitly barred negotiating prices with drug makers. The results of this are now becoming evident: at present, the VA is paying 46 percent less for the most popular brand-name drugs than the average prices posted by the Medicare plans for the same drugs. Because Part D increased the effective demand for drugs without controlling costs, prescription drug prices have risen sharply: during the first quarter of 2006, prices for brand-name pharmaceuticals “jumped 3.9 percent, four times the general inflation rate … and the largest quarterly price increase in six years.”

If this trend is allowed to continue unchecked, it could jeopardize the fiscal viability of the Medicare drug program and seriously undermine whatever political and public support it now has. In addition, this could have significant repercussions on the program as a whole. In the words of economist Stephen W. Schondelmeyer, who specializes in drug industry issues, “Higher drug prices may lead to higher premiums next year, which may discourage enrollees from joining or staying in the program, and fewer enrollees could drive premiums even higher.”

Single Payer promotes greater accountability to the public. One of the key features of the U.S. health care system is its fragmentation. When every player is responsible for only part of the care of part of the population part of the time, there is no overall accountability for how the system functions as whole. Consumers are therefore left wondering who is in charge, and whom they can appeal to when their knowledge is incomplete or their care is inadequate.

The most recent report to Congress of the Medicare Advisory Commission recognizes this: “…perverse payment system incentives, lack of information, and fragmented delivery systems are barriers for full accountability.”

The creation of a single payer would provide an opportunity for creating a system run by a public trust. Benefits and payments would be decided by the insurer which would be under the control of a diverse board representing consumers, providers, business and government.

Single Payer fosters transparency in coverage decisions. Ironically, single payer plans have been criticized for “making all sorts of unbearable trade-offs explicit government policy, rather than obscuring them in complexities.” But we support such explicit trade-offs. Given finite resources, it may not be possible to cover every single treatment, device or pharmaceutical a patient may require or desire. Priorities must be set, and the criteria for these should be transparent and consistently applied.

The practice of “obscuring trade-offs” is irresponsible and demeaning to the American public. Medical care decisions are too important and affect everyone too directly to be made surreptitiously. Moreover, forcing policy-makers to make decisions concerning what to cover will ensure their confronting issues of safety, efficacy, and value-for-money that are often circumvented or overlooked. Trade-offs that are transparent to health care consumers will therefore be in the public’s interest.

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Bruised and Out of Step

My weekend was a lot of hard work which left me tired and achy all the way through Tuesday, worse yet I had moved several large pieces of furniture and in due course managed to smash my fingers,  bump my head and bruise my thigh. Later I made supper and burned my hand:(

Monday sucked too only for very different reasons and while I tried to let everything slid off of me, it wasn’t easy.  Lexx was under the weather and clearly brewing a new illness, by Tuesday she was running a high fever…again. It’s not the fever that is hard to take its the toll her health takes on her emotional wellbeing that cuts me to ribbons.

When she came down the stairs, she stopped when she saw me, then she sat on the step and cried…she said she was tired of being sick. I sat next to her and she folded and cried some more.

What I know of being a parent of a child who has been chronically ill since preschool is that it never gets easier, it only weighs heavier and you never get used to your child’s suffering.

Even though today brought a lower grade fever it also brought a discussion about her spring graduation. Due to her immune deficiency Lexx is an online student and her graduation ceremony will take place in St. Paul. I expected her to be excited about her impending graduation but she wasn’t.  In fact she’s been dragging her feet on school in general and I’ve had a difficult time understanding. After I brought the subject up, she insisted that she would under no circumstance attend her graduation ceremony… then turned her back and pressed her cuffs to her eyes.

It was then that I remembered the tribute that she wrote for her father’s funeral, she said she was afraid of the big days to come…like graduation. She said that she knew that others would be there to fill in for him but that she would spend the whole time wishing with all her heart that he was there. Suddenly her reluctance to clear that milestone made sense.

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