What would you do or say?
Aug 22, 2008
Hi Doc: this is a long question but will try to shorten it.
My former doc left the clinic in 11/07 and I was assigned to another doc(clinic Med Director MD) 12/07. Up to this time, ALL my previous docs from day one(7/94) have said I would never be able to return to work. I have been a treatment failure since 95, but each time a new drug came out it helped for at least 6 mo's or more. I am now at the end of the line and slowly in decline. My last lab was, t-cells= 9 @ 1.8% and declining. V/L was 117,000 and acts like a QRST wave on an EKG.
In the last 4 months my memory problems have seemed to nosedive to the point where I requested testing,MRI,CAT,EEG and the Neurologist put me on Aricept, 10mg, to see if there was any improvement. I also have chronic and debilitating neuropathy and ligament pain, for which I use Naproxen Sodium 600mg.
My predicament: I had requested my current doc to sign a Loan discharge paper from the Fed Student Loan Center because I cannot pay it back at present with bills and SSDI. It has been in forebearance for 3 yrs and no more are allowed.
My doc then wanted to know why I couldn't work?? This doc said he had 6 other patients who are similar to me whose regimens work because of this doc's cocktail. He said that my previous doc made a error during my Maravoric study, so now he could not put me on the regimen his 6 patients are on. I just have to play a waiting game for some miracle new class/type of HIV drug at this point.
Well duh, however he did say the physicians certification line is too small to really write anything so he just put down asymptomatic AIDS, pain and memory loss. He also said that I should include a letter explaining why I couldn't work to the loan center. Shouldn't the doc write the letter, even if I have to pay for it? I am totally confused, no pun intended. Will I be forced to go back to work to pay back my student loan???
How would you have handled this situation as my HIV doc of 8 mo's?? I would love to go back to work cause living on 1,081 monthly doesn't cover the basic living expenses. But I cannot remember things from day to day, some good, some bad, I am only 51 and was 37 when diagnosed. My only other careers that paid good were banking and casino cashier. What the hell would I do now?? I would make more on SSDI than min wage. Whose going to hire a person with advanced endstage AIDS?? What about my risk of catching something from co-workers?? I go out when necessary and try to avoid sick people and children.
My ADAP, Medi/Medi would be affected. I feel like I am in a catch-22. What would you recommend. I might be able to repay the loan but at the moment, I only have about 200.00 net for living expenses after I pay all my bills(credit debt mostly; which I am paying off earnestly). Once the forebearance ends in 11/08 the monthly loan repayment is 130.00. See what I am up against.
Can you help or can you refer me to someone who can. I live in the Palm Springs,CALIF valley (92236)
Response from Dr. Frascino
It's time to change doctors again and fast! The one you currently have is totally unreasonable. (I have many other less polite adjectives for him as well, but I shouldn't use them in mixed company.)
It was totally inappropriate for him to write "asymptomatic AIDS" for your diagnosis, because you are obviously anything but asymptomatic! Perhaps he thinks debilitating neuropathy and cognitive dysfunction are normal???
At the Frascino Medical Group, we would have gladly completed the form for you and included a letter documenting your diagnosis, current symptoms and prognosis.
Should you go back to work? No, of course not. It would just screw up your health and your benefits. What you need to do is get a more compassionate and competent HIV specialist. You have until November to deal with the loan issue, so you should have plenty of time to get this sorted out. If you need a list of certified HIV physician specialists in your area check out The American Academy of HIV Medicine web page: http://aahivm.org/web/index.php?option= com_comprofiler&task=usersList. Also, see below. I'll repost some information about choosing an HIV specialist.
Good luck. Bill, I'm here if you need me, OK?
Re: Need of a private doctor Aug 16, 2008
Dear Dr. Bob, Thank you for all the information you provided in finding the right doctor. I really like the article you attached. You are the Man, you rock. Thank you much
Response from Dr. Frascino
Thanks for your thanks! Rock on and let's get through this together, OK?
I'm here if you need me.
Need a Private doctor Aug 14, 2008
I am HIV Positive living in Seattle area. I currently don't have one and i am looking urgently in a private clinic? Do you know a good one? I asked this question earlier & was told about Peter Shalit who is fully booked until end of year. Please let me know if you have a good one in mind. Thank You.
Response from Dr. Frascino
I would suggest you consult the American Academy of HIV Medicine Web site (www.aahivm.org). There you will find a list of certified HIV specialists arranged by locale. There are a number of well-qualified HIV specialists in the Seattle area. Be sure you hook up with one that you trust and with whom you can easily communicate. Your health insurance plan may have some restrictions, so remember to check this out as well. I'll repost some information below from the archives pertaining to locating an HIV specialist.
Choosing an HIV Care Provider
July 18, 2007
Why Is Choosing an HIV Care Provider Important?
Treating HIV disease is very complicated. There are choices to consider at every stage of the disease. It's best if you and your health care provider work together as a team. That makes it easier to choose and stick to your treatment plan. "Care provider" means a doctor, a physician's assistant, or a nurse practitioner.
There are several issues you may want to consider in choosing an HIV care provider. You might decide to have them be your "regular doctor" for all of your health issues. You might use a different care provider for most health issues and use your HIV provider as a specialist. If your regular provider isn't an HIV specialist, be sure they regularly get expert advice on HIV issues.
Training and Experience
Many people with HIV/AIDS get their care from physicians who are specialists in infectious diseases. However, especially now that people are living longer with HIV, it's important to deal with all of your health issues. You might prefer to have a family practitioner or a specialist in internal medicine as your primary physician.
No matter what their specialty, you will get better HIV care from providers who have experience treating people at all stages of HIV disease. Be sure to ask how many patients with HIV they have treated, and how many they currently see. HIV patients do better when their physicians have more experience treating HIV disease.
Do You Have Similar Ideas About Treating HIV?
Some providers are conservative. They prefer "tried and true" methods. Others are more aggressive. They are willing to try new and experimental treatments. Some are optimistic by nature, and focus on the hopeful or positive side when they talk about test results or future prospects. Others are more realistic. Some are pessimistic.
Some providers are comfortable suggesting "complementary and alternative" therapies such as massage, acupuncture, or herbs. Others stick strictly to Western medicine.
If you want a lot of emotional support, you probably won't be comfortable with a health care provider who only talks about test results. The more comfortable you are with their approach to HIV treatments, the easier it will be for you to get the kind of health care you want. Talk to providers and their patients before you make your choice.
The Provider-Patient Relationship
Many patients do better when they take an active role in planning their own health care. These patients do a lot of reading on their own, and bring information to their providers. They work together to make health care decisions.
Other patients are more comfortable with the provider making important decisions. Decide how you want to work with your provider. See if that fits with the way the provider likes to work with patients.
Help Your Provider Help You
Make sure that your provider has all the information needed to give the best advice about your treatment. This starts with your medical records, which may have to be transferred from another office. When you start working with a new provider, they will probably do a lot of tests to collect "baseline" information. This helps you see how well you're doing as time goes by.
Be sure your provider knows how you feel about using medications, and about your illness. Some people don't mind taking a lot of pills. Other people would rather take as few as possible. Are you willing to change your diet, or the amnount of exercise you do? Your provider should also know about other treatments you are using or want to try, including non-medical ones.
Be honest about your lifestyle. Your eating, sleeping, and work patterns can make a difference for your health care. So can your sexual practices and use of recreational drugs. If your provider seems too judgmental, try to change providers. It's better to have a provider who really knows you instead of holding back information.
Let your provider know about the important people in your life: the people who will support you if you get sick, or will help you make important medical decisions.
The best care provider won't do you any good if you can't get in to see them. Ask them (or their receptionist) how long it usually takes to get an appointment. Find out how well they usually stay on schedule during the day.
The type of insurance you have could limit your choice of a provider. Maybe the provider isn't on the list for your health maintenance organization (HMO) or insurance plan. Be sure to find out how you will be able to pay for their services.
Remember, you don't need an HIV specialist to help you with most of your health care needs. If a good HIV provider is hard to find, or if it's hard to get an appointment, use a non-HIV care provider for your general health care. Just be sure that when you are dealing with HIV issues, you see an experienced HIV provider, or one who consults with an expert in HIV.
Some people are very concerned about keeping their HIV status private. You might choose to get your HIV care from a provider in another town to protect your privacy. You will need to find your own balance between confidentiality and convenience.
Your health care needs might change as time goes by. Also, your ideas about treatment could change. Although you will probably get better medical care from a provider who has known you for a long time, you always have the right to stop seeing one provider and change to another.
To Find a Health Care Provider ...
You can get help finding a care provider from your case manager or from your local Department of Health. You can also ask other people living with HIV. The American Academy of HIV Medicine has a web page to help you find a doctor at http://aahivm.org/web/index.php?option= com_comprofiler&task=usersList.
The Bottom Line
HIV medical care is very complicated, and changes quickly. This makes it important to find an HIV care provider who works with HIV/AIDS patients and is committed to staying up to date. Your relationship with an HIV provider will be better if you are comfortable with each other's personal style and approach to dealing with health issues in general, and HIV in particular.
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