Valen as part of the John Hopkins Study on Antibodies and the Coronavirus vaccine
Friday, April 30, 2021
Valen, Why I advocate photo
Knowing the impact I've had on others, and continue to have, fuels me to share my life, and to strive to live the healthiest and most fulfilling life I can give others and others hope they can too...I feel that being a patient advocate is honoring my donors , honoring the loved ones I've never met and lost from PKD, and also taking part in creating a healthier and brighter future
Valen and her live Kidney Donor, Sally, the day after her transplant, August 14, 2002 at John Hopkins in Baltimore from Dr. Robert Montgomery Talking tonight at 8pmEST here: https://www.facebook.com/355829404988958/posts/912265019345391/
Valen and her live Kidney Donor, Sally, the day after her transplant, August 14, 2002 at John Hopkins in Baltimore from Dr. Robert Montgomery Talking tonight at 8pmEST here: https://www.facebook.com/355829404988958/posts/912265019345391/
Broadcast of Valen Keefer
Tune in Friday, April 30th at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James "Uncle Jim" Myers. This week on Kidney Stories 2 our guest is Valen Keefer, a double transplant recipient and super Patient Advocate for PKD and organ donation. Join us for an inspiring show and hang out with Uncle Jim. Only on the Urban Health Outreach Media Network Facebook Page and YouTube Channel. #kidneycancer #kidneydisease #transplant #organtransplant #organdonation #chronicillness #renaldialysis #kidneydialysis #diabetes #kidneycare #renaldonation #kidneydonation #kidneydonor #hemodialysis #posttransplant #kidneywalk #kidneystones #kidneystone #PKD
https://www.facebook.com/355829404988958/posts/912265019345391/
Wednesday, April 28, 2021
Evaluation of Pain and Kidney Disease by Dr Jessica Donnan By Jim Myers
Evaluation of Pain and Kidney Disease by Dr Jessica Donnan
By Jim Myers
1. Introduction
I have been asked to review a study entitled, "PAIN," By Dr Jessica Donnan, RN, BScN, MHA, for the GET ON TRACK Study Group. This is a very interesting article concerning the effects of pain from kidney transplants and limited information about pain with chronic kidney disease. It is an excellent, well-written article. It is extremely well organized and documented.
The premise of the study is that you may experience some post-kidney .j transplant pain. The article does a great job of explaining the nature of kidney transplant pain, how to track it to help lower the Pain, the effects medications have on the Pain, and what and how you can alleviate the post-transplant kidney pain. The author does a great job of covering these subjects.
2. Did You Know : Kidney Transplant and Chronic Kidney Disease Pain
The author correctly points out that there may be residual pain after a kidney transplant. This pain has been noted by other writers as well:
"Your belly and side will be sore for the first 1 to 2 weeks after surgery. You also may have some numbness around the cut (incision) the doctor made. You may feel tired while you are healing. It may take 3 to 6 weeks for your energy to fully return."
https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=ud1689#abt4526
(Excellent Source for all aspects of this issue; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5258796/
3. Research Evidence Shows: Kidney Transplant Details
The study does an excellent job of the number of patients who have pain post-kidney transplant. Other authors agree.
https://journals.lww.com/nursing/Citation/2009/02000/Managing_posttransplantation_pain_syndromes.42.aspx.
The author makes a distinction between good pain control and poor pain control. Good medication for your newly transplanted kidney is imperative:
"Acetaminophen is the best pain reliever after transplant. Aspirin 81 mg daily for heart protection is okay if instructed by your doctor. Never take NSAIDs like ibuprofen (Advil, Motrin) and naproxen (Aleve)."
https://journals.lww.com/transplantjournal/Fulltext/2020/04000/Nonopioid_Modalities_for_Acute_Postoperative_Pain.10.aspx
https://www.docwirenews.com/nephtimes/opioid-free-pain-management-following-kidney-transplant/
The examples given concerning bad pain control are excellent and clearly defined. The literature agrees with the study's conclusions.
https://www.medigraphic.com/cgi-bin/new/resumenI.cgi?IDARTICULO=21599
4. How Am Doing? Tracking Your Post-Transplant Pain
This section of the paper is particularly helpful. The key here is not only the time of day and the activity causing pain, but tracking both the affects of certain medications (anti-rejection medications may need to be adjusted, changed or discontinued), but also what activities alleviate the pain. Other authors stress the importance of Pain tracking post-transplant.
https://my.clevelandclinic.org/departments/transplant/programs/kidney/recovery
5. What I Can Do To Alliviate the Pain
The study in this section gives us some helpful tips as to how we can alleviate post-transplant pain. The literature seems to confirm many of these suggestions.
https://www.mayoclinic.org/tests-procedures/kidney-transplant/about/pac-20384777
6. How Can I Do It: Practical Steps to Alleviate the Pain
Many great post-transplant suggestions are made in this section of the paper. Other suggestion for practical steps to help with your post-transplant kidney are included here:
https://www.barnesjewish.org/Medical-Services/Transplant/Kidney-Transplant/Kidney-Transplant-Process/After-Kidney-Transplant-What-To-Expect; https://www.muhealth.org/conditions-treatments/urology/kidney-transplant/after-transplant
7. Conclusion:
This is a terrific piece about an all to common occurrence, 'pain after a kidney transplant but seldom written issue. There are essential solutions offered here in terms of tracking and things that can be done to prevent or alleviate post kidney transplant pain. For the kidney transplant recipient is an important topic for discussion and it is very well done here.
• Relevance of Content
The content here is entirely relevant and fresh. This is an important topic for any kidney transplant patient.
• Usefulness of Content
The content is extremely useful. The period of adjustments statements give hope to the initially concerned kidney transplant patient.
• Clarity of Content
The content here is crystal clear and simple, comprehensivable explanations of a difficult topic are given here.
• Applicability of Information
The information is very applicable to every kidney transplant patient.
My overall assessment is this is a meaningful article with essential information for kidney transplant patients.
Monday, April 26, 2021
EVALUATION OF DELAYED GRAFT FUNCTION TESTIMONIAL By Patrick O. Gee. Evaluated by Jim Myers
EVALUATION OF DELAYED GRAFT FUNCTION TESTIMONIAL By Patrick O. Gee.
Evaluated by Jim Myers
1. Introduction
I have been asked to review a study entitled, "Religion and Spirituality by Patrick O. Gee (PhD, JLC, Patient-partner and Minister, Founder/CEHD; advocate, Inc.), for the GET ON TRACK Study Group. I am not quantified to intelligently comment on the body of the article, however; I believe I was retained to comment on the TESTIMONIAL concerning his kidney transplant and the Delayed Graft Function (Sleepy Kidney). I believe I am qualified to do that.
In the interest of full disclosure, Patrick and I are friends and we act as kidney advocates for many of the same kidney advocacy and chronic diseases organizations. I believe this to be an objective evaluation of his kidney transplant testimonial.
2. Patrick's Story
I have heard Patrick tell his kidney story many times before, but this is the most detailed l have ever encountered.
• He began peritoneal dialysis on December 1, 2013.
• He received his kidney transplant from a deceased donor April 21, 3rd 2017.
• As Patrick notes, "When I woke up from the surgery, the organ did not."
• His transplant physician informed him that it is not uncommon that there is a delayed graft function (sleepy kidney)occurring with a deceased donor kidney and so the doctor ordered a 24 hour-a-day regimen of hemodialysis every other day to wake the kidney up.
• 5 days after receiving his kidney, Patrick was informed that he had a blood clot in his neck and he would need surgery to remove it.
• Three days after the blood clot removal, he was informed that he was bleeding internally and would need additional surgery.
• Seventeen days after the third surgery, he would need a 4th surgery to create a small-sized laparoscopic hole in his abdomen to drain a lymph fluid buildup caused by the kidney transplant surgery.
• 47 days after kidney transplant surgery, the new kidney finally woke up! He notes in the piece that there is biblical significance to the number 40 (representing trials, tribulations & probation), while the number 7 represents completion and perfection.
• According to Patrick, a then Minister in Traning, "God used my MISERY to launch his MINISTRY, God had tested his faith and spiritual perseverance.
To learn more about Patrick's Kidney Journey check here:
• https://youtu.be/f-Opyzt-ujQ
• (Kidney Story, including kidney transplant story)
• https://youtu.be/o9eHgXghixY
• (Transplant Story and Apollo Steering Committee Experience)
General Information about Patrick:
https://m.youtube.com/watch?v=JQ4g5kiYWvs&feature=youtu.be#dialog
(Motivational Mondays]
https://www.asn-online.org/about/bio.aspx?ID=3911168
https://cdi.washington.edu/people/patrick-o-gee-sr-phd/
https://chronicdiseasecoalition.org/patient-advocate-spotlight-patrick-ogee/
https://aakp.org/aakp-2019-national-patient-meeting-meet-the-planning-committee-patrick-gee/
https://www.donatelifevirginia.org/lifeline/2020/03/minister-grateful-for-his-second-chance-at-life/
https://www.antidote.me/blog/after-a-surprise-kidney-disease-diagnosis-this-patient-turned-to-education-and-advocacy
3. Delayed Graft Response (Sleepy Kidney)
"Delayed graft function (DGF) refers to the acute kidney injury that occurs in the first week of kidney transplantation, which necessitates dialysis intervention. DGF is associated with higher rates of acute cellular rejection and shorter graft survivals."
https://www.karger.com/Article/FullText/491558.
It is marked by the use of dialysis within 8 days of a kidney transplant to help revive and 'jumpstart' the newly transplanted kidney.
The usual time course of DGF is 10 to 14 days, and patients may require supportive dialysis therapy for management of fluid and electrolyte disturbances.
"DGF is a major obstacle for allograft survival as it can be compounded by acute rejection and chronic allograft nephropathy (CAN). Patients with both DGF and acute rejection had a 5-year survival rate of 34% in U.S. transplant patients between 1985 and 1992 (13). A meta-analysis of 34 studies from 1988 through 2007 concluded that patients with DGF had a 49% pooled incidence of acute rejection compared to 35% incidence in non-DGF patients."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3280444/.
The consequences on the immediate post-TX period are prolongs hospitalizations and increased potential morbidity and health care costs. The major concern for transplant recipients with DGF is the potential for early acute rejection.
Factors for potential DGF include:
• Expanded criteria donor;
• Donors over the age of 55;
• Cold ischemic time,
• Receipt of a DCD kidney,
• Body mass index (BMI),
• Terminal creatinine level,
• Anoxic or cerebrovascular cause of death,
• A history of hypertension, &
• Greater HLA mismatch.
https://www.sciencedirect.com/topics/medicine-and-dentistry/delayed-graft-function.
There are some Recipient Criteria as well:
• Male sex,
• Black race,
• History of diabetes,
• Longer time on dialysis,
• Increased BMI,
• Frailty,
• Elevated Panel Reactive Antibody (PRA),
• Prior transplant,
• Previous blood transfusions,
• Elevated pretransplant phosphate levels, and
• A mismatch in body size between the donor and the recipient.
Early Course of the Patient With a Kidney Transplant by Paul M. Schroder, ... Stuart J. Knechtle, inKidney Transplantation - Principles and Practice (Eighth Edition), 2019.
4. Conclusion
This is a terrific piece about an all to common occurrence, 'Sleepy Kidney', but seldom mentioned issue. The mental strain of receiving a potentially dead on arrival kidney is made vivid by Patrick's story. For the kidney transplant recipient is an important topic for discussion and it is very well done here.
• Relevance of Content
The content here is entirely relevant and fresh. This is an important topic for any kidney transplant patient.
• Usefulness of Content
The content is extremely useful. The period of adjustments statements give hope to the initially concerned kidney transplant patient.
• Clarity of Content
The content here is crystal clear and simple, comprehensivable explanations of a difficult topic are given here.
• Applicability of Information
The information is very applicable to every kidney transplant patient.
My overall assessment is this is a meaningful article with essential information for kidney transplant patients.
Sunday, April 25, 2021
EVALUATION OF RELATIONSHIPS AND SOCIAL LIFE
EVALUATION OF RELATIONSHIPS AND SOCIAL LIFE
By Amanda Grandinetti
Evaluation by Jim Myers
1. Introduction
I have been asked to review a study entitled, "RELATIONSHIPS AND SOCIAL LIFE By Amanda Grandinetti for the GET ON TRACK Study Group. This is a very interesting article concerning the effects that a kidney transplant has on our relationships with others and the self-imposed restrictions on our social lives. It is an excellent, well-written article. It is extremely well organized and documented.
I wish to make a full disclosure of any potential conflicts of interest. Amanda Grandinetti is a friend of mine. I support her work and her studies to obtain her PhD. I have had Amanda on my live broadcast with the Urban Outreach Media Network. I do believe this review to be an objective evaluation of her article.
The premise of the study is that post-kidney transplant our relationships and social circle may change. Some of the changes come about naturally, by circumstances we cannot control. Others however, are self-imposed restrictions that we have some control over, that we can in fact overcome or even broaden our social interactions. The piece does a great job of suggesting steps to interact with others and to overcome our fears and social restrictions.
2. Did You Know: Changes After Transplant
The article does an excellent job of defining the theme for the piece in the initial paragraphs. Even though some of the the pre-transplant restrictions have been removed and eventually physically we can engage in many activities we were removed from, mentally there may be limitations that are ingrained that prevents us from engaging in social activities that lead to more contacts.
Changes to relationships are inevitable. This is a normal thing for all persons as time passes, but it can be acute for kidney patients at all stages of ESRD spectrum, including kidney transplant.
Finally, the author makes a great point about carry over inhibitors on social interaction as a result of past kidney experiences on the road preceding a kidney transplant.
My independent research seems to agree with the author's point of view, with some expansion on her points of discussion.
An Australian study seems to indicate the psychologically, the restrictions in the mind of a kidney transplant patient do not change much from the medically and physical restrictions of a dialysis patient.
"Organ failure represents a serious clinical problem with relevant social and interpersonal implications and occupational disadvantages for patients on a waiting list for a transplant. These patients are often incapacitated by asthenia and malaise because they are forced to live for long periods waiting for an organ, with many discomfort disease-related and also life-style limitations (haemodialysis, diet), emotional disturbances such as depression, anxiety, rage and, in some cases, economic difficulties." In other words, the quality of life for many dialysis patients does not significantly improve after kidney transplant due to experience while on dialysis.
Also, my research shows that the author is correct when she states that kidney transplant can bring it's own subset of mental illness that are separate from any dialysis/pre-transplant carry over issues in the event of pre-emptive dialysis.
These issues include;
• Post-traumatic stress disorder;
• Adjustment disorder;
• Psychosomatic disorders;
• Guilt from benefiting from someone else's loss of life ;
• Emotional vulnerability with body image;
• Self-representation disorders, or paranoid reactions to a panic crisis due to the presence of a foreign object (transplanted organ);.
• Reactive psychopathologic process (depression, anxiety, dissociative disorder) both due to transplanted organ acceptance difficulties and immunosuppressive therapy complications.
In addition, a living donor transplant recipient has his/her own unique set of mental issues. A Korean study found issues including:
• Hypochondriasis,
• Depression,
• Hysteria,
• Mental issues with non-related living donations,
• Mental issues with related family members/donors
• Mental issues with spouse/donors
3. How Am I Doing: Issues Addressed in the Article
This is the most focused section of the study. The author makes the point that there are many positive results that occur in transplanted kidney patients.
"Studies show that quality of life increases after kidney transplantation. As a recipient, you can expect a social life that returns you to “normalcy”. Recipients are more likely to join recreational clubs, travel frequently, and participate in recreational/religious activities and social events than when they were on hemodialysis." This is a reflection that adjustments can be made over a post-transplant period that are positive in nature.
https://my.clevelandclinic.org/health/treatments/4352-kidney-transplant-surgery-returning-to-normal-activities; https://pubmed.ncbi.nlm.nih.gov/27740731/; https://pubmed.ncbi.nlm.nih.gov/12795674/
The article notes there are two exceptions to the period of adjustment rule:
• The kidney transplant recipient returning to work;
• Participation in sports.
It is of note, that this evaluator was specifically told at the time of his kidney transplant 5 years ago to avoid any contact sports.
Kidney Transplant Patients Returning to Work:
"Most kidney transplant recipients can return to work and other normal activities within eight weeks after transplant. No lifting objects weighing more than 10 pounds or exercise other than walking until the wound has healed (usually about six weeks after surgery). Have frequent checkups as you continue recovering."
https://www.mayoclinic.org/tests-procedures/kidney-transplant/about/pac-20384777; https://pubmed.ncbi.nlm.nih.gov/31394573/;
Kidney Transplant Patients Playing Sports:
http://transplanttalk.childrenshospital.org/tips-tricks/spring-2015-sports-transplant/; https://pubmed.ncbi.nlm.nih.gov/25242758/; https://www.researchgate.net/publication/265910639_Sport_Activity_and_Health-Related_Quality_of_Life_After_Kidney_Transplantation
4. What Can I Do: Your Lifestyle After Kidney Transplant
The author points out in this section of the study, that satisfaction with your physical activities and social interaction is subjective; you alone can evaluate your own satisfaction. This is a an important point. It goes without saying, that if you are unhappy with your situation, you can still take steps to make changes.
Very practical advice given here by the author. You can pretty much resume your normal activities. This is succinct and to the point. It is also supported in the literature.
https://columbiasurgery.org/kidney-transplant/resuming-life-after-kidney-transplantation#sexual; https://my.clevelandclinic.org/health/treatments/4352-kidney-transplant-surgery-returning-to-normal-activities;
5. How Can I Do It: What Steps Can I Take to Achieve the Lifestyle I Desire After Kidney Transplant
This is the best section of the article. The advice given here is unique:
"Write a list of all the activities you wanted to do but felt you couldn’t before your transplant. This can open up new hobbies and avenues to explore with friends.
• Journal: journaling can provide an outlet to process your experiences. It can also reduce stress.
• Take notes: If some social circumstances seem scary, write them down so you can remember to talk about them with your family, friends, or even your transplant team.
• Find a support group of transplant patients or a peer counselling (available through various organizations e.g. Kidney Foundation of Canada). Getting to know others who have received a kidney transplant can form new friendships, relieve stress, and answer any questions you may not want to ask your team. Other recipients have experienced many of the same things you are now experiencing.
• Get back to the basics: get a full night of sleep and hydrate.
• If you are really struggling, seek a counselor who can help you process some of your fears."
Some additional steps to return to normalcy are listed here: https://columbiasurgery.org/kidney-transplant/resuming-life-after-kidney-transplantation; https://transplantliving.org/kidney/life-after-transplant/.
6. Conclusion
This is a terrific piece about a seldom mentioned issue. The mental aspect of the kidney transplant recipient is an important topic for discussion and it is very well done here. The 'how to do it's advice is outstanding.
• Relevance of Content
The content here is entirely relevant and fresh. This is an important topic for any kidney transplant patient.
• Usefulness of Content
The content is extremely useful. The period of adjustments statements give hope to the initially concerned kidney transplant patient.
• Clarity of Content
The content here is crystal clear and simple, comprehensivable explanations of a difficult topic are given here.
• Applicability of Information
The information is very applicable to every kidney transplant patient.
My overall assessment is this is a meaningful article with essential information for kidney transplant patients.
Evaluation of Cardiovascular Disease and Kidney Transplant by Dr Marie Chantel Fortin By Jim Myers
Evaluation of Cardiovascular Disease and Kidney Transplant by Dr Marie Chantel Fortin
By Jim Myers
1. Introduction
I have been asked to review a study entitled, "Evaluation of Cardiovascular Disease and Kidney Transplant" by Dr Marie Chantel Fortin for the GET ON TRACK Study Group. This is a very interesting article concerning the effects of Cardiovascular Disease on Kidney Transplant Patients. Shockingly, cardiovascular disease is a leading cause of death in kidney transplant patients, even when the transplanted kidney is functioning well.
2. Did You Know: Cardiovascular Disease and Kidney Transplant
The author outlines 3 causes of cardiovascular diseases for us the affect kidney patients including:
• Coronary heart disease
• Cerebrovascular brain disease &
• Peripheral vascular disease.
Others have suggested contributing causes like:
• Diabetes
• Congestive heart failure
• Infection
• Hypertension
• Hyperlipidemia (genetic disorders resulting in a high level of lipids circulating in the blood)
• Anemia
• Unintended Affects of Immunosuppression. https://cjasn.asnjournals.org/content/3/2/491 The author notes that cardiovascular disease is responsible for one third of admissions to the hospital after kidney transplant and CVS can damage the transplanted kidney.
Major risk factors include:
• HBP
• Diabetes
• High Cholesterol Level
• Smoking
• Inactive Lifestyles.
Other authorities seem to agree: https://academic.oup.com/ndt/article/34/5/760/5449079; https://pubmed.ncbi.nlm.nih.gov/29753404/; https://pubmed.ncbi.nlm.nih.gov/29753404/; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482292/
Other factors noted were:
• Patent arteriovenous fistula
• Traditional risk factors
• Pre-Transplant cardiovascular disease
• Chronic kidney disease
• Albuminuria
• Hyperhomocysteinemia
• Homoarginine deficiency
• Hyperphosphatemia
• Dialysis vintage
https://www.uptodate.com/contents/kidney-transplantation-in-adults-risk-factors-for-cardiovascular-disease-in-the-kidney-transplant-recipient
3. Research Shows: Issue for Discussion in the Paper- Cardiovascular Disease and Frequently Related Risk Factors After Kidney Transplantation
The article does a great job of setting up the issues for discussion in the remainder of the piece demonstrating the connection between cardiovascular disease and the risk factors present after kidney transplant by statistics:
"• High blood pressure, which is defined as a blood pressure over 140/90, affects 40-90% of all kidney transplant recipients.
• Diabetes after transplantation affects between 24-42% of all kidney transplant recipients. Diabetes is defined as a fasting blood sugar over 7 mmol/L or a random glucose level (sugar level) higher than 11.1 mmol/L.
• High blood cholesterol, or dyslipidemia, affects 50% of all kidney transplant recipients.;" Fortin, Cardiovascular (heart) disease and kidney transplantation (2020).
4. How Am I Doing: Symptoms Associated With Cardiovascular Disease
The article gives us some practical tips for the early detection, care, treatment and prevention of cardiovascular diseases, post-kidney transplant by discussing symptoms to watch for and to call emergency in the event of a stroke.
Call 911 immediately if you have any of the following:
*heart attack symptoms:
• Chest discomfort;
• Sweating;
• Upper body discomfort;
• Nausea;
• Shortness of breath;
• Light-headedness.
Stroke symptoms include:
• Face drooping;
• Inability to raise both arms;
• Slurred speech.
The literature suggested these symptoms are correct and the suggested steps to take are necessary. https://www.mayoclinic.org/diseases-conditions/heart-disease/symptoms-causes/syc-20353118; https://www.medicinenet.com/heart_disease_coronary_artery_disease/article.htm
Other suggested symptoms include:
• Pain or pressure in the chest, which may indicate angina;
• Pain or discomfort in the arms, left shoulder, elbows, jaw, or back;
• Shortness of breath;
• Nausea and fatigue;
• Lightheadedness or dizziness
• Cold sweats
https://www.medicalnewstoday.com/articles/257484
5. What Can I Do To Decrease The Risk For Cardiovascular Disease
This section of the study discusses preventive steps we can take to avoid the risk of cardiovascular diseases as kidney transplant patients. It's the strongest section of the paper.
Those steps include:
"1. Stop smoking if you are a smoke
2. Take your medication for high blood pressure, diabetes, and cholesterol as prescribed.
3. Monitor your blood sugar and your blood pressure and talk to your healthcare provider when they are not within the normal range.
4. Adopt healthy eating habits: a. 7-10 vegetables and fruits servings per day;
b. Eat whole grain foods;
c. Eat at least 2 servings of fish per week and include beans, lentils and tofu as part of your diet.
d. When you eat meat, choose lean meat and keep your portion under 4 oz.
5. Be active: 150 minutes or more of moderate to vigorous intensity physical activities. 6. Maintain a healthy weight."
6. How Do I Decrease The Risk For Cardiovascular Disease
The advice given here is basically to work with your doctor and post-transplant team. This is great advice.
Advice included:
• Get your physician's help with medications to maintain correct blood pressure and blood sugar levels;
• Hire a nutritionist to utilize a specific diet for your needs;
• Monitor your physical activity with a smart watch or pedometer; &
• Consult with a physiotherapist or kinesiologist to help you reach activity goals.
You can also find expert help through the American Heart Association, with their experts who can perform a cardiac risk assessment, https://edhub.ama-assn.org/society-hospital-medicine/interactive/18297523; https://labtestsonline.org/tests/cardiac-risk-assessment; https://jamanetwork.com/journals/jama/article-abstract/2768470 and consult with the NIH's National Heart, Lung and Blood Institute online for additional advice and expertise. https://www.nhlbi.nih.gov/health-topics/heart-failure
7. Conclusion
This is an excellent paper on a subject that is not very well known, especially to kidney transplant patients. It is disturbing to me that this is not discussed more frequently and in more detail with kidney transplant patients. It is direct and to the point; an easy read that is comprehensive. There are few, if any weaknesses here.
• Relevance of Content
The content is extremely relevant because of the prevalence of cardiovascular issues with Kidney transplant patients.
• Usefulness of Content
The content is exceptionally useful. In particular, the section on prevention is highly useful. The advice given here should be followed by all kidney transplant patients.
• Clarity of Content
This is a strong point of the article, it is easy to understand. The content is exceptionally clear.
• Applicability of Information
The information related in the study is exceptionally applicable. This is 'must know information for kidney transplant patients.
My overall assessment is this is a meaningful article with essential information for kidney transplant patients.
Friday, April 23, 2021
Evaluation: The Side Effects of Medication by Holly and Nicolas Managing Your Immunosuppressive Medications After Your Kidney Transplant
Evaluation: The Side Effects of Medication by Holly and Nicolas
Managing Your Immunosuppressive Medications After Your Kidney Transplant
Evaluation by Jim Myers
1. Introduction
I have been asked to evaluate a study on the effects of immunosuppressant medications after a kidney transplant and the proper way to take the medications and to track them by the GET ON TRACK Study Group. This is a very interesting and timely topic for transplanted kidney patients. I found this study to be complete in addressing issues of concern to kidney transplant patients and helpful in terms of suggestions for taking and tracking your anti-rejection medications.
2. Basics: Your Immune System and Anti-rejection Medications
The description of why immunosuppressant medications are necessary after a kidney transplant are succinct and to the point: if you do not take the medications, your body's natural inclination is to reject your transplanted kidney as a foreign body. The other point very skillful made here is that the anti-rejection medications must be taken for the rest of the transplanted organs life.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782235/; https://www.webmd.com/a-to-z-guides/organ-transplant-after-the-transplant.
What is not discussed here is the consequences of not taking the medications as directed, namely going on or back to dialysis or the possibility of death. https://my.clevelandclinic.org/health/articles/21134-kidney-transplant-rejection; https://www.sciencedirect.com/science/article/pii/S0085253815485023; https://pubmed.ncbi.nlm.nih.gov/12371992/
The authors do a very good job of laying the foundation for side effects of the immunosuppression medications like infection and cancer. Many of us on anti-rejection medications have been advised to regularly consult with a dermatologist (skin doctor). https://www.aad.org/public/fad/what-is-a-derm.
It may have been appropriate hear to mention that such a consult may be necessary to detect infections or cancer while taking immunosuppressants for early treatment and prevention of serious issues.
https://www.newswise.com/articles/transplant-patients-need-to-be-examined-by-a-dermatologist-the-american-dermatologic-association-endorses-enhanced-screening-surveillance-and-prevention-of-skin-cancer-and-skin-infection-in-patients-with-solid-organ-transplants; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2423225/.
The other possible side effects are adequately described and the advice to consult with your transplant team about side effect issues is excellent. The foundation for tracking the taking of your meds and dealing with the side effects is very well done.
3. What Research Evidence Shows: A Statement of the Issues for This Study
This section of the paper is particularly well done. It lays out the Issues for the rest of the discussion in a perfect way:
A. How do we deal with and track the Side effects of our anti-rejection medications that have such an impact on the kidney transplant patient's well-being?
B. The importance of taking our anti-rejection medications as directed to avoid rejection.
4. How to Track the Side Effects of Your Immunosuppressive Medications
The authors have developed a chart in this section of the study to keep track of your side effects from the medications. This is a wonderfully prudent idea. In this day and age of My Chart/Email ability to communicate with your post-transplant nephrologist, as well as the popularity of telehealth visits, the sooner your doctor is made aware of the Issues, the sooner appropriate adjustments can be made. Terrific guidance here, particularly in light of the Coronavirus and difficulty with face-to-face meetings at this point in time.
5. How to Track If You Are Correctly Taking Your Immunosuppressive Medications
Great advice given here as well. The tracking of taking your immunnosupressants is vital, particularly early on in your experience. I was asked to chart my anti-rejection medications twice a day at a certain time and to track my temperature, blood pressure and heart rate all in the same chart.
Greater emphasis may be needed here on the importance of taking your meds at a certain time in the morning and evening every day. https://caredx.com/patients-and-caregivers/patient-resources/does-timing-matter-when-taking-anti-rejection-medications-for-your-transplanted-kidney-or-heart/; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3540791/.
6. How to Deal with Side Effects of Your Immunosuppressive Medications
This is an exquisitely well-written section of the study. The advice to consult with your post-transplant team so they can make adjustments is spot on. Great job here.
7. How to Take Your Immunosuppressive Medications Correctly
Again, this is a nearly perfect section of the study. All of the advice given here has been discussed with me by my kidney transplant team. This is the best section of the study. The advice that follows about taking your medications correctly and charting has already been covered in this review.
8. Conclusions
I really liked the paper and I felt that it gives great direction to the kidney transplant patient concerning the taking and charting of his/her immunosuppressant medications. I have made some suggestions for improvements based on my experiences as kidney transplant patient on anti-rejection medications, but overall this paper is solid. A great job to help the new kidney transplant patient in particular.
• Relevance of Content
I found the content to be extremely relevant for kidney transplant patients taking immunosuppressant medications. Succinct and to the point. The advice given here is very helpful for the transplant patient.
• Usefulness of Content
The content is completely useful. No esoteric fluff here. Down and dirty information and guidance that can be immediately put to good use. Strongest point of this study!
• Clarity of Content
Clear as a bell content here. Very readable and understandable. A valuable read any kidney transplant patient could understand.
• Applicability of Information
Prefect applicability to the kidney transplant patient. Very sharply focused on the matter of immunosuppressants, how to take them, how to chart them and the importance of consistently taking them.
My overall assessment is this is an excellent paper, particularly for someone who has been newly transplanted and is seeking correct guidance. A great job here!
Wednesday, April 21, 2021
MEDIGAP BLOG (SHARED)
THE JACK REYNOLDS MEMORIAL MEDIGAP EXPANSION ACT: WHO IS GETTING LEFT BEHIND
1. Introduction
This blog is about the Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) Senate version coming soon. Kidney failure (also known as end-stage renal disease, or ESRD) is the last stage of chronic kidney disease, when the kidneys no longer function. People with kidney failure must receive ongoing, regular dialysis treatments or obtain a kidney transplant to survive. Most Americans with kidney failure are eligible for Medicare, regardless of age; those under the age of 65 are eligible for Medicare as their primary insurance due to their ESRD status, and they need access to private Medigap (Medicare supplemental insurance) plans just like patients who are 65 or older.
2. Where The Gap Comes In
Federal law stipulates that Medigap insurers must offer plans to all beneficiaries age 65 and over, but state law dictates Medigap policy for Medicare beneficiaries under 65. There are currently 20 states in which Medigap providers are not required to offer Medigap plans to ESRD Medicare beneficiaries under the age of 65, leaving patients with high out-of-pocket costs. Medicare coverage for dialysis patients is not enough. Medicare covers only 80% of the costs of outpatient procedures like dialysis, which means patients must pay the remaining 20% coinsurance with no annual out-of-pocket maximum. Medicare beneficiaries on dialysis face out-of-pocket costs of about $10,000 every year—an extreme cost for the more than 80% of people on dialysis who are too sick to work. This is simply unaffordable for many patients and can cause them to spiral into bankruptcy.
3. Kidney Transplant Issue
Additionally, ESRD Medicare beneficiaries are required to have supplemental insurance in order to be added to the kidney transplant waiting list, as Medicare alone is not considered full coverage by transplant centers across the nation. For most Medicare beneficiaries, Medigap is their secondary insurance. Without access to Medigap plans, ESRD Medicare beneficiaries under 65 cannot access kidney transplantation—the best treatment option for people with kidney failure because it increases the chances of living a longer, healthier life.
4. Who Was Jack Reynolds ?
I was at an awards dinner in WDC, with the Dialysis Patient Citizens. BTW, one of the honorees at that dinner was a great kidney advocate, Jack Reynolds, whose name is attached to one of the pieces of legislation we are going to discuss with pop you today, The Jack Reynolds Memorial Medigap Expansion Act. I knew Jack personally and had the opportunity to advocate with him in DC. He was a farm boy at the age of 4 had a 100 gallon barrel of water crushing his abdomen. By the age of 22, he went on dialysis, and remained on dialysis for over 45 years. He would later become a founding member of the DPC, President of the DPC, and a lifelong fighter for kidney justice. He even appeared in 2 major motion pictures, Nebraska and Downsizing. He was the patient who was on dialysis the longest in the history of Iowa.
5. Benefits of the Jack Reynolds Memorial Medigap Expansion Act
The Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) would require insurers nationwide to offer the same Medigap plans to ESRD Medicare beneficiaries under age 65 that all Medicare beneficiaries over age 65 have access to. The bill would provide a vital insurance option to dialysis patients to help protect them against high out-of-pockets costs, and it would give dialysis patients on Medicare the full insurance coverage they need to be accepted onto the kidney transplant waiting list.
To cosponsor this important legislation please contact Denise Fleming in Rep. Cindy Axne’s office at denise.fleming@mail.house.gov or Adriianna Lagorio in Rep. Jaime Herrera Beutler’s office at adriianna.lagorio@mail.house.gov.
For more information about the Jack Reynolds Memorial Medigap Expansion Act, please contact the American Kidney Fund: Holly Bode, Vice President of Government Affairs, hbode@kidneyfund.org Deborah Darcy, Director of Government Affairs, ddarcy@kidneyfund.org
6. Melissa Tuff's Story
When Mel was 16, after she was diagnosed with ESRD and placed on dialysis, she was actually over insured. She was qualified. She had Medicare, as a minor she was covered by Blue Cross/Blue Shield under her mother's policy, and Medicaid. She went through a difficult period. After being transplanted at the University of Michigan, Ann Arbor. October 7th, 2005, her kidney rejected in 2016 after 11 years. She was hospitalized all told for a month. As a result of her hospitalization, she lost her job, her home, her car & her marriage. To keep body and soul together, she moved in with her Dad in Florida. Here original intent was to have a dual listing in both Michigan and Florida, increasing her chances of getting a kidney transplant. Melissa is a difficult match as she had a number treatments to prevent rejection causing a high rate of antibodies. At the time of the move, the average wait time in Florida was much shorter than the average wait time in Michigan. Because when she moved to Florida, she lost all her supplemental/20% gap coverage, the University of Michigan informed her that she could no longer list with them. Her attempts to obtain Medicaid coverage in Florida were in vain, because she made $15 too much monthly to qualify. She was then put on a share of cost plan, meaning Medicaid coverage would only pick up after she met her out of pocket assigned share of costs of $1,314 a month. This program was of no help to Mel, because it is a state insurance program, and valid only in the state of residency, Florida. She tried to obtain supplemental coverage in Florida, but was denied based on age issues and on the basis of a pre-existing condition, even at the highest rate of $900/m for Medigap or Medicare Advantage. She was forced to withdraw her listing from Michigan. When she did her financial interview as part of her Pre-Transplant evaluation at Tampa General Hospital, she was informed by the financial coordinator that because she did not have a secondary, and due to your high share of cost, she would be required to have $12,584 in savings. This figure reflected the $4,700 “doughnut hole” in your part D prescription coverage plus 6 months of the $1314 share of cost required before Medicaid would begin covering additional medical expenses. This pre-transplant deposit issue is extensively discussed here: https://youtu.be/xYy2PR_PLW4. To raise the money to meet her current dialysis expenses as well as her pre-transplant deposit requirements, Melissa has enlisted the services of Help Hope Live, a nonprofit that specializes in fundraising for patients in need of organ transplant, where the monies raised are not income to Mel and are 100% tax deductible to the donor. For more information check here: https://helphopelive.org/campaign/9104/
As Melissa said in her own words: "6 years later, life would be easier with a secondary. I still have quite a bit of monthly medical expenses and my dialysis treatments are only covered at 80% leaving me on the hook for the rest. A secondary plan would greatly reduce my monthly responsibility and afford me the luxury of being listed in multiple states which would greatly increase my chances of getting a new kidney." https://kidneystoriesonblogger.blogspot.com/2021/04/mels-insurance-adventure-in-her-own.html?m=1 There's some light at the end of the tunnel, as under a paired donation program at a second transplant center, Cleveland Clinic, in August of 2019 setting off a chain of donations. Because Mel's donor donated to someone else, the next matching kidney would go to Mel. She has been waiting almost 2 years now. To keep up with Melissa Tuff' s status check out her advocacy page here: https://m.facebook.com/MelNeedsAKidney/ For more information on Mel, check out her most recent interview: https://youtu.be/XnqjJM7rW0E
7. Conclusion
Underage ESRD/Medicare patients face potentially large amounts of debt without supplemental insurance like Medigap coverage. Many States do not offer a Medigap plan. Medicare Advantage plans are network plans and your doctor may not be included in the network. The Jack Reynolds Memorial Medigap Expansion Act would require states to make Medigap Plans available to those under 65. Please consider supporting this law by following the link: https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=376
9. References
A. The Jack Reynolds Memorial Medigap Expansion Act
https://www.congress.gov/bill/117th-congress/house-bill/1676?s=1&r=17
https://www.govtrack.us/congress/bills/117/hr1676
B. What is Medigap Coverage?
https://www.medicare.gov/supplements-other-insurance/whats-medicare-supplement-insurance-medigap
C. American Kidney Fund Materials on Where the Gap Comes In, Challenges Getting Listed for Transplant & Benefits of the Jack Reynolds Memorial Medigap Expansion Act
https://www.kidneyfund.org/news/news-releases/akf-applauds-introduction-of-jack-reynolds-memorial-medigap-expansion-act.html
AKF Leave Behind Document on the Jack Reynolds Memorial Medigap Expansion Act: https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdocumentcloud.adobe.com%2Flink%2Freview%3Furi%3Durn%3Aaaid%3Ascds%3AUS%3A30994208-fd94-4b87-a947-bf12a834a5c7&data=04%7C01%7C%7Ca2cbbc9f10ef4bc7233d08d9028c58c2%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C637543624063652221%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&sdata=kXiyfubHS%2Bqof4UIk2Bm8h69pJCpX7dFhJTIZBZeOug%3D&reserved=0
Ask your U.S. Representative to Cosponsor Medigap Legislation https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=376
"Your ability to afford health care shouldn't depend on where you live. But in 20 states, #ESRD patients under 65 on #Medicare are not able to purchase #Medigap coverage, exposing them to unaffordable out-of-pocket costs." 10:25 AM · Mar 10, 2021·Twitter Web App
D. Who Was Jack Reynolds?
https://action.momsrising.org/sign/medigap-kidney-2021/ https://axne.house.gov/media/press-releases/reps-axne-and-herrera-beutler-introduce-jack-reynolds-memorial-medigap
https://www.dialysispatients.org/news/sen-grassley-leaders-in-dialysis-community-pay-tribute-to-the-late-jack-reynolds-former-dpc-president-and-founding-board-member/
https://www.dialysispatients.org/news/reintroduction-of-jack-reynolds-memorial-medigap-expansion-act/
https://www.prnewswire.com/news-releases/dialysis-patient-citizens-commends-reintroduction-of-the-jack-reynolds-memorial-medigap-expansion-act-301243993.html
http://jasonyang9.com/board-members/jack-reynolds.html
E. Melissa Tuff's Story https://youtu.be/XnqjJM7rW0E https://youtu.be/xYy2PR_PLW4 https://helphopelive.org/campaign/9104/ https://m.facebook.com/MelNeedsAKidney/ https://kidneystoriesonblogger.blogspot.com/2021/04/mels-insurance-adventure-in-her-own.html?m=1
Sunday, April 18, 2021
Medigap Blog Final
THE JACK REYNOLDS MEMORIAL MEDIGAP EXPANSION ACT: WHO IS GETTING LEFT BEHIND
1. Introduction
This blog is about the Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) Senate version coming soon. Kidney failure (also known as end-stage renal disease, or ESRD) is the last stage of chronic kidney disease, when the kidneys no longer function. People with kidney failure must receive ongoing, regular dialysis treatments or obtain a kidney transplant to survive. Most Americans with kidney failure are eligible for Medicare, regardless of age; those under the age of 65 are eligible for Medicare as their primary insurance due to their ESRD status, and they need access to private Medigap (Medicare supplemental insurance) plans just like patients who are 65 or older.
2. Where The Gap Comes In
Federal law stipulates that Medigap insurers must offer plans to all beneficiaries age 65 and over, but state law dictates Medigap policy for Medicare beneficiaries under 65. There are currently 20 states in which Medigap providers are not required to offer Medigap plans to ESRD Medicare beneficiaries under the age of 65, leaving patients with high out-of-pocket costs. Medicare coverage for dialysis patients is not enough. Medicare covers only 80% of the costs of outpatient procedures like dialysis, which means patients must pay the remaining 20% coinsurance with no annual out-of-pocket maximum. Medicare beneficiaries on dialysis face out-of-pocket costs of about $10,000 every year—an extreme cost for the more than 80% of people on dialysis who are too sick to work. This is simply unaffordable for many patients and can cause them to spiral into bankruptcy.
3. Kidney Transplant Issue
Additionally, ESRD Medicare beneficiaries are required to have supplemental insurance in order to be added to the kidney transplant waiting list, as Medicare alone is not considered full coverage by transplant centers across the nation. For most Medicare beneficiaries, Medigap is their secondary insurance. Without access to Medigap plans, ESRD Medicare beneficiaries under 65 cannot access kidney transplantation—the best treatment option for people with kidney failure because it increases the chances of living a longer, healthier life.
4. Who Was Jack Reynolds ?
I was at an awards dinner in WDC, with the Dialysis Patient Citizens. BTW, one of the honorees at that dinner was a great kidney advocate, Jack Reynolds, whose name is attached to one of the pieces of legislation we are going to discuss with pop you today, The Jack Reynolds Memorial Medigap Expansion Act. I knew Jack personally and had the opportunity to advocate with him in DC. He was a farm boy at the age of 4 had a 100 gallon barrel of water crushing his abdomen. By the age of 22, he went on dialysis, and remained on dialysis for over 45 years. He would later become a founding member of the DPC, President of the DPC, and a lifelong fighter for kidney justice. He even appeared in 2 major motion pictures, Nebraska and Downsizing. He was the patient who was on dialysis the longest in the history of Iowa.
5. Benefits of the Jack Reynolds Memorial Medigap Expansion Act
The Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) would require insurers nationwide to offer the same Medigap plans to ESRD Medicare beneficiaries under age 65 that all Medicare beneficiaries over age 65 have access to. The bill would provide a vital insurance option to dialysis patients to help protect them against high out-of-pockets costs, and it would give dialysis patients on Medicare the full insurance coverage they need to be accepted onto the kidney transplant waiting list.
To cosponsor this important legislation please contact Denise Fleming in Rep. Cindy Axne’s office at denise.fleming@mail.house.gov or Adriianna Lagorio in Rep. Jaime Herrera Beutler’s office at adriianna.lagorio@mail.house.gov.
For more information about the Jack Reynolds Memorial Medigap Expansion Act, please contact the American Kidney Fund: Holly Bode, Vice President of Government Affairs, hbode@kidneyfund.org Deborah Darcy, Director of Government Affairs, ddarcy@kidneyfund.org
6. Melissa Tuff's Story
When Mel was 16, after she was diagnosed with ESRD and placed on dialysis, she was actually over insured. She was qualified. She had Medicare, as a minor she was covered by Blue Cross/Blue Shield under her mother's policy, and Medicaid. She went through a difficult period. After being transplanted at the University of Michigan, Ann Arbor. October 7th, 2005, her kidney rejected in 2016 after 11 years. She was hospitalized all told for a month. As a result of her hospitalization, she lost her job, her home, her car & her marriage. To keep body and soul together, she moved in with her Dad in Florida. Here original intent was to have a dual listing in both Michigan and Florida, increasing her chances of getting a kidney transplant. Melissa is a difficult match as she had a number treatments to prevent rejection causing a high rate of antibodies. At the time of the move, the average wait time in Florida was much shorter than the average wait time in Michigan. Because when she moved to Florida, she lost all her supplemental/20% gap coverage, the University of Michigan informed her that she could no longer list with them. Her attempts to obtain Medicaid coverage in Florida were in vain, because she made $15 too much monthly to qualify. She was then put on a share of cost plan, meaning Medicaid coverage would only pick up after she met her out of pocket assigned share of costs of $1,314 a month. This program was of no help to Mel, because it is a state insurance program, and valid only in the state of residency, Florida. She tried to obtain supplemental coverage in Florida, but was denied based on age issues and on the basis of a pre-existing condition, even at the highest rate of $900/m for Medigap or Medicare Advantage. She was forced to withdraw her listing from Michigan. When she did her financial interview as part of her Pre-Transplant evaluation at Tampa General Hospital, she was informed by the financial coordinator that because she did not have a secondary, and due to your high share of cost, she would be required to have $12,584 in savings. This figure reflected the $4,700 “doughnut hole” in your part D prescription coverage plus 6 months of the $1314 share of cost required before Medicaid would begin covering additional medical expenses. This pre-transplant deposit issue is extensively discussed here: https://youtu.be/xYy2PR_PLW4. To raise the money to meet her current dialysis expenses as well as her pre-transplant deposit requirements, Melissa has enlisted the services of Help Hope Live, a nonprofit that specializes in fundraising for patients in need of organ transplant, where the monies raised are not income to Mel and are 100% tax deductible to the donor. For more information check here: https://helphopelive.org/campaign/9104/
As Melissa said in her own words: "6 years later, life would be easier with a secondary. I still have quite a bit of monthly medical expenses and my dialysis treatments are only covered at 80% leaving me on the hook for the rest. A secondary plan would greatly reduce my monthly responsibility and afford me the luxury of being listed in multiple states which would greatly increase my chances of getting a new kidney." https://kidneystoriesonblogger.blogspot.com/2021/04/mels-insurance-adventure-in-her-own.html?m=1 There's some light at the end of the tunnel, as under a paired donation program at a second transplant center, Cleveland Clinic, in August of 2019 setting off a chain of donations. Because Mel's donor donated to someone else, the next matching kidney would go to Mel. She has been waiting almost 2 years now. To keep up with Melissa Tuff' s status check out her advocacy page here: https://m.facebook.com/MelNeedsAKidney/ For more information on Mel, check out her most recent interview: https://youtu.be/XnqjJM7rW0E
7. A Word of Warning
I checked with a couple of other kidney advocacy groups on this law. Concern was expressed that the law could be couple with other laws not benefiting kidney patients and some of the lobbyists on the law are not favorable to kidney patients. If circumstances change, I will let you know.
8. Conclusion
Underage ESRD/Medicare patients face potentially large amounts of debt without supplemental insurance like Medigap coverage. Many States do not offer a Medigap plan. Medicare Advantage plans are network plans and your doctor may not be included in the network. The Jack Reynolds Memorial Medigap Expansion Act would require states to make Medigap Plans available to those under 65. Please consider supporting this law by following the link: https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=376
9. References
A. The Jack Reynolds Memorial Medigap Expansion Act
https://www.congress.gov/bill/117th-congress/house-bill/1676?s=1&r=17
https://www.govtrack.us/congress/bills/117/hr1676
B. What is Medigap Coverage?
https://www.medicare.gov/supplements-other-insurance/whats-medicare-supplement-insurance-medigap
C. American Kidney Fund Materials on Where the Gap Comes In, Challenges Getting Listed for Transplant & Benefits of the Jack Reynolds Memorial Medigap Expansion Act
https://www.kidneyfund.org/news/news-releases/akf-applauds-introduction-of-jack-reynolds-memorial-medigap-expansion-act.html
AKF Leave Behind Document on the Jack Reynolds Memorial Medigap Expansion Act: https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdocumentcloud.adobe.com%2Flink%2Freview%3Furi%3Durn%3Aaaid%3Ascds%3AUS%3A30994208-fd94-4b87-a947-bf12a834a5c7&data=04%7C01%7C%7Ca2cbbc9f10ef4bc7233d08d9028c58c2%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C637543624063652221%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&sdata=kXiyfubHS%2Bqof4UIk2Bm8h69pJCpX7dFhJTIZBZeOug%3D&reserved=0
Ask your U.S. Representative to Cosponsor Medigap Legislation https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=376
"Your ability to afford health care shouldn't depend on where you live. But in 20 states, #ESRD patients under 65 on #Medicare are not able to purchase #Medigap coverage, exposing them to unaffordable out-of-pocket costs." 10:25 AM · Mar 10, 2021·Twitter Web App
D. Who Was Jack Reynolds?
https://action.momsrising.org/sign/medigap-kidney-2021/ https://axne.house.gov/media/press-releases/reps-axne-and-herrera-beutler-introduce-jack-reynolds-memorial-medigap
https://www.dialysispatients.org/news/sen-grassley-leaders-in-dialysis-community-pay-tribute-to-the-late-jack-reynolds-former-dpc-president-and-founding-board-member/
https://www.dialysispatients.org/news/reintroduction-of-jack-reynolds-memorial-medigap-expansion-act/
https://www.prnewswire.com/news-releases/dialysis-patient-citizens-commends-reintroduction-of-the-jack-reynolds-memorial-medigap-expansion-act-301243993.html
http://jasonyang9.com/board-members/jack-reynolds.html
E. Melissa Tuff's Story https://youtu.be/XnqjJM7rW0E https://youtu.be/xYy2PR_PLW4 https://helphopelive.org/campaign/9104/ https://m.facebook.com/MelNeedsAKidney/ https://kidneystoriesonblogger.blogspot.com/2021/04/mels-insurance-adventure-in-her-own.html?m=1
Mel's Insurance Adventure in her own Words
The Great Insurance Challenge
"When I was diagnosed with ESRD in 1996 and had begun dialysis treatments, I had the opposite challenge that I do today. Back then, I was over-insured at times! I qualified for Medicare after a period of being on dialysis but as a minor, I was covered under my mother’s Blue Cross/Blue Shield policy in addition to qualifying for state Medicaid. Oh, how I miss the days of having 3 insurance companies fight over who was going to be my primary payer! When I moved from Michigan to Florida in 2010, having known I would need another kidney to replace my rejecting transplanted kidney, I began the process of getting listed with a transplant hospital in the area. Since I still had family in Michigan, I thought I would try to maintain a dual listing in both states to increase my chances of getting another organ since I have exceptionally high antibodies which makes my chances of finding a match close to the odds of hitting a large lottery jackpot.
The University of Michigan Hospital where I was listed at the time of my move informed me that my relocation would affect my ability to be listed with them due to my only having a Medicare policy with no secondary. Initially, I attempted to obtain Medicaid as a secondary in Florida however I made $15 too much monthly to qualify so I was put on a “share of cost” plan. A share of cost plan means that Medicaid coverage would only become active once I met the out-of-pocket monthly expense, which is my share of cost. At the time, I was assigned a share of cost of $1,314 per month. Unfortunately, this coverage did me no good because it is a state insurance program and is only valid in the state of residency.
The transplant social worker then scheduled a couple of conference calls with some insurance providers in Florida (Humana, Blue Cross and Blue Shield, and Aetna) in an effort to obtain a secondary insurance policy so that I could retain my listing status in Michigan. During the conference calls, I was informed by every single one of the agents we spoke with that due to having an active insurance policy in place (Medicare) that legally they could deny me coverage based on my pre-existing conditions. Even at their highest policy rate, which was over $900 a month, they would not provide me secondary coverage.
Discouraged, I decided that I would have to withdraw myself from the U of M transplant program and be limited to the hospitals in Florida. Then to my surprise, during my pre-transplant evaluation at Tampa General Hospital, I was informed by the financial coordinator that because I did not have a secondary, and due to my high share of cost, I would be required to have $12,584 in savings. This figure reflected the $4,700 “doughnut hole” in my part D prescription coverage plus 6 months of the $1314 share of cost required before Medicaid would begin covering additional medical expenses. As you can imagine, this news left me feeling deflated. I had no clue how I would raise that kind of money when I couldn’t even qualify for a secondary insurance plan! However, I was not ready to throw in the towel and I began raising money using a non-profit that specializes in fundraising for patients in need of organ transplants and those who’ve suffered from catastrophic illnesses or injuries.
6 years later, life would be easier with a secondary. I still have quite a bit of monthly medical expenses and my dialysis treatments are only covered at 80% leaving me on the hook for the rest. A secondary plan would greatly reduce my monthly responsibility and afford me the luxury of being listed in multiple states which would greatly increase my chances of getting a new kidney."
"When I was diagnosed with ESRD in 1996 and had begun dialysis treatments, I had the opposite challenge that I do today. Back then, I was over-insured at times! I qualified for Medicare after a period of being on dialysis but as a minor, I was covered under my mother’s Blue Cross/Blue Shield policy in addition to qualifying for state Medicaid. Oh, how I miss the days of having 3 insurance companies fight over who was going to be my primary payer! When I moved from Michigan to Florida in 2010, having known I would need another kidney to replace my rejecting transplanted kidney, I began the process of getting listed with a transplant hospital in the area. Since I still had family in Michigan, I thought I would try to maintain a dual listing in both states to increase my chances of getting another organ since I have exceptionally high antibodies which makes my chances of finding a match close to the odds of hitting a large lottery jackpot.
The University of Michigan Hospital where I was listed at the time of my move informed me that my relocation would affect my ability to be listed with them due to my only having a Medicare policy with no secondary. Initially, I attempted to obtain Medicaid as a secondary in Florida however I made $15 too much monthly to qualify so I was put on a “share of cost” plan. A share of cost plan means that Medicaid coverage would only become active once I met the out-of-pocket monthly expense, which is my share of cost. At the time, I was assigned a share of cost of $1,314 per month. Unfortunately, this coverage did me no good because it is a state insurance program and is only valid in the state of residency.
The transplant social worker then scheduled a couple of conference calls with some insurance providers in Florida (Humana, Blue Cross and Blue Shield, and Aetna) in an effort to obtain a secondary insurance policy so that I could retain my listing status in Michigan. During the conference calls, I was informed by every single one of the agents we spoke with that due to having an active insurance policy in place (Medicare) that legally they could deny me coverage based on my pre-existing conditions. Even at their highest policy rate, which was over $900 a month, they would not provide me secondary coverage.
Discouraged, I decided that I would have to withdraw myself from the U of M transplant program and be limited to the hospitals in Florida. Then to my surprise, during my pre-transplant evaluation at Tampa General Hospital, I was informed by the financial coordinator that because I did not have a secondary, and due to my high share of cost, I would be required to have $12,584 in savings. This figure reflected the $4,700 “doughnut hole” in my part D prescription coverage plus 6 months of the $1314 share of cost required before Medicaid would begin covering additional medical expenses. As you can imagine, this news left me feeling deflated. I had no clue how I would raise that kind of money when I couldn’t even qualify for a secondary insurance plan! However, I was not ready to throw in the towel and I began raising money using a non-profit that specializes in fundraising for patients in need of organ transplants and those who’ve suffered from catastrophic illnesses or injuries.
6 years later, life would be easier with a secondary. I still have quite a bit of monthly medical expenses and my dialysis treatments are only covered at 80% leaving me on the hook for the rest. A secondary plan would greatly reduce my monthly responsibility and afford me the luxury of being listed in multiple states which would greatly increase my chances of getting a new kidney."
Saturday, April 17, 2021
Melissa Tuff Broadcast
Did you miss the Melissa Tuff Broadcast? Here you go! https://www.facebook.com/UrbanHealthOutreachmedia/videos/443523653381811/
THE JACK REYNOLDS MEMORIAL MEDIGAP EXPANSION ACT: WHO IS GETTING LEFT BEHIND (Draft )
THE JACK REYNOLDS MEMORIAL MEDIGAP EXPANSION ACT: WHO IS GETTING LEFT BEHIND
1. Introduction
This blog is about the Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) Senate version coming soon. Kidney failure (also known as end-stage renal disease, or ESRD) is the last stage of chronic kidney disease, when the kidneys no longer function. People with kidney failure must receive ongoing, regular dialysis treatments or obtain a kidney transplant to survive. Most Americans with kidney failure are eligible for Medicare, regardless of age; those under the age of 65 are eligible for Medicare as their primary insurance due to their ESRD status, and they need access to private Medigap (Medicare supplemental insurance) plans just like patients who are 65 or older.
2. Where The Gap Comes In
Federal law stipulates that Medigap insurers must offer plans to all beneficiaries age 65 and over, but state law dictates Medigap policy for Medicare beneficiaries under 65. There are currently 20 states in which Medigap providers are not required to offer Medigap plans to ESRD Medicare beneficiaries under the age of 65, leaving patients with high out-of-pocket costs. Medicare coverage for dialysis patients is not enough. Medicare covers only 80% of the costs of outpatient procedures like dialysis, which means patients must pay the remaining 20% coinsurance with no annual out-of-pocket maximum. Medicare beneficiaries on dialysis face out-of-pocket costs of about $10,000 every year—an extreme cost for the more than 80% of people on dialysis who are too sick to work. This is simply unaffordable for many patients and can cause them to spiral into bankruptcy.
3. Kidney Transplant Issue
Additionally, ESRD Medicare beneficiaries are required to have supplemental insurance in order to be added to the kidney transplant waiting list, as Medicare alone is not considered full coverage by transplant centers across the nation. For most Medicare beneficiaries, Medigap is their secondary insurance. Without access to Medigap plans, ESRD Medicare beneficiaries under 65 cannot access kidney transplantation—the best treatment option for people with kidney failure because it increases the chances of living a longer, healthier life.
4. Who Was Jack Reynolds ?
I was at an awards dinner in WDC, with the Dialysis Patient Citizens. BTW, one of the honorees at that dinner was a great kidney advocate, Jack Reynolds, whose name is attached to one of the pieces of legislation we are going to discuss with pop you today, The Jack Reynolds Memorial Medigap Expansion Act. I knew Jack personally and had the opportunity to advocate with him in DC. He was a farm boy at the age of 4 had a 100 gallon barrel of water crushing his abdomen. By the age of 22, he went on dialysis, and remained on dialysis for over 45 years. He would later become a founding member of the DPC, President of the DPC, and a lifelong fighter for kidney justice. He even appeared in 2 major motion pictures, Nebraska and Downsizing. He was the patient who was on dialysis the longest in the history of Iowa.
5. Benefits of the Jack Reynolds Memorial Medigap Expansion Act
The Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) would require insurers nationwide to offer the same Medigap plans to ESRD Medicare beneficiaries under age 65 that all Medicare beneficiaries over age 65 have access to. The bill would provide a vital insurance option to dialysis patients to help protect them against high out-of-pockets costs, and it would give dialysis patients on Medicare the full insurance coverage they need to be accepted onto the kidney transplant waiting list. To cosponsor this important legislation please contact Denise Fleming in Rep. Cindy Axne’s office at denise.fleming@mail.house.gov or Adriianna Lagorio in Rep. Jaime Herrera Beutler’s office at adriianna.lagorio@mail.house.gov.
For more information about the Jack Reynolds Memorial Medigap Expansion Act, please contact the American Kidney Fund: Holly Bode, Vice President of Government Affairs, hbode@kidneyfund.org
Deborah Darcy, Director of Government Affairs, ddarcy@kidneyfund.org
6. Melissa Tuff's Story
When Mel was 16, after she was diagnosed with ESRD and placed on dialysis, she was actually over insured. She was qualified. She had Medicare, as a minor she was covered by Blue Cross/Blue Shield under her mother's policy, and Medicaid. She went through a difficult period.
After being transplanted at the University of Michigan, Ann Arbor. October 7th, 2005, her kidney rejected in 2016 after 11 years. She was hospitalized all told for a month. As a result of her hospitalization, she lost her job, her home, her car & her marriage. To keep body and soul together, she moved in with her Dad in Florida. Here original intent was to have a dual listing in both Michigan and Florida, increasing her chances of getting a kidney transplant. Melissa is a difficult match as she had a number treatments to prevent rejection causing a high rate of antibodies. At the time of the move, the average wait time in Florida was much shorter than the average wait time in Michigan.
Because when she moved to Florida, she lost all her supplemental/20% gap coverage, the University of Michigan informed her that she could no longer list with them. Her attempts to obtain Medicaid coverage in Florida were in vain, because she made $15 too much monthly to qualify. She was then put on a share of cost plan, meaning Medicaid coverage would only pick up after she met her out of pocket assigned share of costs of $1,314 a month. This program was of no help to Mel, because it is a state insurance program, and valid only in the state of residency, Florida.
She tried to obtain supplemental coverage in Florida, but was denied based on age issues and on the basis of a pre-existing condition, even at the highest rate of $900/m for Medigap or Medicare Advantage. She was forced to withdraw her listing from Michigan. When she did her financial interview as part of her Pre-Transplant evaluation at Tampa General Hospital, she was informed by the financial coordinator that because she did not have a secondary, and due to your high share of cost, she would be required to have $12,584 in savings. This figure reflected the $4,700 “doughnut hole” in your part D prescription coverage plus 6 months of the $1314 share of cost required before Medicaid would begin covering additional medical expenses.
This pre-transplant deposit issue is extensively discussed here: https://youtu.be/xYy2PR_PLW4.
To raise the money to meet her current dialysis expenses as well as her pre-transplant deposit requirements, Melissa has enlisted the services of Help Hope Live, a nonprofit that specializes in fundraising for patients in need of organ transplant, where the monies raised are not income to Mel and are 100% tax deductible to the donor.
For more information check here: https://helphopelive.org/campaign/9104/
As Melissa said in her own words: "6 years later, life would be easier with a secondary. I still have quite a bit of monthly medical expenses and my dialysis treatments are only covered at 80% leaving me on the hook for the rest. A secondary plan would greatly reduce my monthly responsibility and afford me the luxury of being listed in multiple states which would greatly increase my chances of getting a new kidney."
There's some light at the end of the tunnel, as under a paired donation program at a second transplant center, Cleveland Clinic, in August of 2019 setting off a chain of donations. Because Mel's donor donated to someone else, the next matching kidney would go to Mel. She has been waiting almost 2 years now.
To keep up with Melissa Tuff' s status check out her advocacy page here: https://m.facebook.com/MelNeedsAKidney/ For more information on Mel, check out her most recent interview: https://youtu.be/XnqjJM7rW0E
7. A Word of Warning
I checked with a couple of other kidney advocacy groups on this law. Concern was expressed that the law could be couple with other laws not benefiting kidney patients and some of the lobbyists on the law are not favorable to kidney patients. If circumstances change, I will let you know. 8. Conclusion Underage ESRD/Medicare patients face potentially large amounts of debt without supplemental insurance like Medigap coverage. Many States do not offer a Medigap plan. Medicare Advantage plans are network plans and your doctor may not be included in the network. The Jack Reynolds Memorial Medigap Expansion Act would require states to make Medigap Plans available to those under 65.
Please consider supporting this law by following the link: https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=376 9. References Get Outlook for Android
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