Dear Presidential Candidates:
One of the key issues for me in the upcoming presidential campaign is mental health. I am only interested in supporting a candidate who will establish mental health insurance parity, support a comprehensive and innovative Bipolar Wellness Program, and will listen to bipolar consumers who are not affiliated with mental health organizations that are funded by pharmaceutical companies--as well as those who are.
(As an aside, I am not anti-medication although I am medication resistant. However, I strongly believe that medication--even when it works--should only be part of a larger wellness program.)
The participants in the Bipolar Wellness Pilot Program I am proposing--which certainly could use tweaking--should be the most successful and motivated bipolar consumers. The theory behind this is that most programs are provided for the sickest people who are in psychiatric hospitals, and/or those suffering from alcohol and drug addiction and/or other psychiatric conditions in addition to bipolar disorder. So, the results are rarely valuable to those of us who are just bipolar, have been highly disciplined and have worked terribly hard to get well, and still suffer from severe depressions for months at a time.
I've spent more than 12 years researching this illness, trying to cope with the fall-out of being so ill, trying to be remain hopeful and upbeat for my son and my husband, and trying to survive when the psychic pain of these continual depressive episodes has been overwhelming. The Bipolar Wellness Pilot Program I'm recommending is intended for people like me. If you could just give us a chance to get well, then perhaps we could finally learn something significant that could help others.
2. A complete psychological examination.
3. Personality and temperament tests to determine whether there are common behavioral patterns that could be addressed in a skills-based class.
4. Providing a Wellness Manager (WM) to oversee each case, discuss the treatment the consumer has received, and the treatment she would like to receive. The WM will help consumers choose a counselor or a therapist, a psychiatrist, possibly a psychiatric nurse, and any other medical team members. In conjunction with the medical team and the consumer, the WM will help the consumer determine whether she needs person-to-person visits, telephone conversations, or online visits, and how often they need to be scheduled. The WM will help the consumer decide whether she wants to participate in a cognitive therapy program, an interpersonal therapy program, and or an educational skills-based program.
5. The WM will help set up adjunctive treatment options, including including art therapy, music therapy, biofeedback, acupuncture, neurofeedback, hypnosis, light therapy, writing therapy, massage, horticultural therapy, and stress management (among others), and allow consumers to participate in a reasonable number of programs.
6. Every consumers' medication history will be entered into a computer program to determine what medications she has taken, in what combinations, and what dosages, and what the outcomes have been. This data will be evaluated by a highly skilled doctor who specializes in psychiatric medication and who will make recommendations to the consumers' psychiatrist.
7. The consumer will meet with a nutritionist to determine whether her dietary needs are being met and to develop dietary recommendations.
8. The consumer will participate in a yoga program and/or meet with an exercise/movement specialist to develop an exercise program, which will be provided free of cost at a local YMCA or Bipolar Wellness Center.
9. The consumer will participate in a weekly mindfulness-meditation program.
10. The consumer will be provided with a computer generated mood chart that she will fill out on a daily basis, and which will be fed into a program so that mood charts can be analyzed on a daily, weekly, monthy, and yearly basis.
11. To launch each program, consumers will spend five days in a Wellness Center so that all the medical tests and lab work can be done, psychological evaluations can be completed, medications can be evaluated, and they can develop a relationship with their Wellness Managers, meet with medical staff members, and wellness team members, and begin participating in wellness activities.
12. The length of the program will have to be determined and a method for evaluating progress determined. As with any relationships, some teams members will have to be replaced over time, and adjunctive therapies adapted or changed. As various needs arise, new program elements including career-related advice will be provided.
I have no idea what kind of budget we're talking about but if one compares the Bipolar Wellness Pilot Program I am proposing with the $16 million National Institutes of Mental Health Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD), one would have to conclude that my program cannot help but be more effective, less expensive, and of far greater value to the bipolar population.
Begun in 1998 and concluded in 2005, the STEP-BD researchers treated 4,360 patients. In 2006, Roy M. Perlis, M.D., one of the chief investigators of the study, told Jim Rosack from Psychiatric News, "We still have a lot to do." The results he was focusing on at the time were based on 1,469 patients who participated in the program for at least two years.
Rosack reports the following, "The researchers found that slightly more than half (858 patients, or 58 percent) of this group achieved recovery, defined as having no more than two symptoms of the disorder for a period of at least eight weeks during the two-year follow-up period."
"Within that two-year window, nearly half of those who achieved recovery (416 patients, or 48.5 percent) relapsed; almost twice as many patients who relapsed suffered a depressive episode (298 patients, or 34.7 percent) than those relapsing to a manic, hypomanic, or mixed episode (118 patients, or 13.8 percent)."
As far as I'm concerned, these results are dismal. I'm hoping that whomever becomes president will appoint a blue-ribbon committee to determine the following:
1) Why the STEP-BD, the first real study to determine the "best treatment methods for bipolar disorder," wasn't begun until 1998 despite the high rate of suicide for bipolar disorder and the large quantity of psychiatric medication that is prescribed for it;
2) Why STEP-BD was such a pedestrian study and focused so heavily on medication and a "core psychosocial intervention" as opposed to other treatments options;
3) Why the researchers were so surprised to learn that the depressive side of this illness is more likely to occur than the manic side (despite the fact that you could search hundreds of online sites and have consumers tell you this without spending $16 million); and
4) Why the pharmaceutical companies have a lock on this illness and why funding is so heavily focused on pharmaceuticals rather than other treatment options. One would also have to ask why there aren't better medications with fewer side effects, and how doctors determine which medications to prescribe in what combinations and dosages. Finally, someone should be asking consumers whether the medication has worsened their condition rather than improved it.
As you can see, there are so many issues to discuss about the STEP-BD and the treatment options in general. The problem is: Who's in charge of bipolar disorder within the federal government? Who's accountable? Who decides what programs to fund?
Perhaps I would know more if I belonged to a mental health organization but I don't. The issue is that I don't consider myself "mentally ill." I believe that label is stigmatic and self-defeating. I look at illness from a mind-body perspective and don't understand why being bipolar is worse than being diabetic, having high blood pressure or heart disease, or cancer.
In closing, I guess my point is that I don't want to die from this illness, but I am finding it increasingly difficult to withstand any more depressive episodes. If 50 percent of the diabetic population tried to commit suicide, the American people would would be appalled. But manic-depressives are killing themselves on a regular basis and no one seems to care.
At this point in my life, I feel that my only legacy is the pain and suffering I have endured...needlessly. And I need someone to care. More than that, I need someone to help me implement a Bipolar Wellness Program that I believe would work--for me and for others who live with this debilitating illness.