Home Dialysis Central Article "ACT NOW" by Dr. Teri Browne

Act Now To Protect Healthcare For Americans With Kidney Disease!

This blog post was made by Dr. Teri Browne on June 27th, 2017.

Major health care reform in the U.S. right now could affect YOU. In fact, the Senate may vote as early as this week on its “Better Care Reconciliation Act” (BCRA). The BCRA would replace the Affordable Care Act (ACA), which some call “Obamacare”. If passed, this new law would make sweeping changes to health insurance for ALL Americans. Those with chronic illnesses—like kidney disease—would feel the effects most. Some Senators are trying to push the bill so quickly that you may only have days to make your voice heard. At the end of this post, I’ll tell you how to reach your Senator and what you may want to say.

The Congressional Budget Office says that the BCRA will increase the number of Americans without health insurance by 22 million in 2026.

The BCRA would change most health plans that pay for dialysis and the rest of the health care you need. It would not change Medicare,which pays for dialysis or kidney transplants for those who qualify. However, Medicare never pays 100%, so even if you have it, you still need a second health plan. Medicaid, an employer group health plan, or a private health plan would pay the balance that is left. Here are some terms that you will need to know:

• Medicaid: the largest U.S. government health care program - started in 1965 to provide health care to those with very low incomes who were also disabled, seniors, children, or pregnant. Medicaid and the Children’s Health Insurance Program (CHIP) insure 16.7 million Americans. States and the federal government both pay for Medicaid. Each state has its own guidelines for who qualifies and what services it provides. In 2014, the ACA started Medicaid Expansion. States that chose to do this gave Medicaid given to anyone who earned up to 138% of the federal poverty limit ($20,782 for one person; $42,435 for a family of 4). See the mapbelow to find out if you live in one of the 31 states (or Washington DC) that expanded Medicaid. Or, visit this website to learn more.

• Health Insurance Exchange Marketplaces - sites in each state created by the ACA that offer health plans to those who earn too much to get Medicaid and do not have jobs with health plans. In 2017, 12,216,003 Americans got an Exchange health plan. You have one if you bought insurance from www.healthcare.gov.  The plans are “Bronze,” “Silver,” “Gold,” or “Platinum.” A Platinum plan covers the most services and costs the most. ACA rules put limits on the “out-of-pocket” costs like deductibles, copays, or coinsurance these plans could charge you. The ACA had federal subsidies to help pay for Exchange health plans. One person earning up to 400% of the federal poverty limit ($47,520) or a family of 4 earning up to $97,200) could get help to pay for their health plan. Those who earn the least got the most help. Subsides came in 2 forms:
  1. Premium Tax Credits - the federal government pays for part of a bronze, silver, gold, or platinum health plan. You can get this tax credit in advance or claim it on your tax returns.
  2. Cost-Sharing Subsidies - help to pay for out-of-pocket costs. You must have a silver plan (covers 70% of your medical costs), and only those who make up to 250% of the federal poverty limit ($30,150 for one person or $61,500 for a family of 4) can get this help. The federal government pays for it.
  * NOTE: In some states (CA, CO, CT, DC, ID, MD, MA, MN, MS, NM, NY, RI, UT, VT, WA) you can buy an Exchange health plan without using www.healthcare.gov.

• Employer Group Health Insurance – a health plan you or a spouse or parent gets from work.

HOW WOULD THE BCRA CHANGE MY HEALTH COVERAGE?

• Who would be covered?
  This bill keeps the ACA rule that children up to 26 years old can get insurance under their parents’ plans.
• Who would have to buy a health plan?
  The BCRA does not require all Americans to have a health plan or pay a tax penalty (like the ACA does). BUT…the BCRA requires a 6 month wait for someone who does not have a health plan to get coverage after they apply. So, if you find out you have kidney disease and do not have a health plan, you have to wait 6 months before a plan will start to pay for your care. And, if you miss a payment, you will have to wait 6 months before your health insurance will start again. During those 6 months, you will have to pay all of your health care costs—for dialysis, hospital stays, surgeries, everything.
• What would happen to those with pre-existing conditions like kidney disease or being a kidney donor?
  Like the ACA, the BCRA requires states and companies to offer health plans to all. BUT…the BCRA would remove the ten “essential health benefits” after 2019. And, it would put back lifetime and annual caps on how much your health plan would pay for your health care. So, companies could choose NOT to pay for costly things like drugs, lab tests, dialysis, diabetes supplies, transplant, etc. Or—they could charge you a lot more than you pay now. And it will be harder to compare plans’ cost and coverage. Often cheaper premiums mean higher out-of-pocket costs or fewer covered services.

WHAT IS AN ESSENTIAL HEALTH BENEFIT?

Before the ACA, insurance companies, employers, and states could choose what health plans would cover. The ACA required Exchange plans and Medicaid to offer ten guaranteed services as part of those plans. These were

1. Outpatient services - includes dialysis
2. Emergency care
3. Hospital stays (includes surgery)
4. Pregnancy, maternity, and newborn care
5. Mental health and substance use care
6. Prescription drugs
7. Rehabilitation care (like physical, speech, and occupational therapy) and devices (like walkers, canes, crutches, glucose monitors, artificial limbs, breathing machines)
8. Laboratory tests
9. Preventive and wellness care and chronic disease management
10. Pediatric care, including oral and vision care

The Congressional Budget Office (CBO) estimates that about half of Americans live in states that will waive essential health benefits. Before the ACA:

• 10% of Americans did not have a health plan that covered prescription drugs.
• 82% of those with an employer health plan had a yearly out-of-pocket maximum.
• 59% of those with an employer health plan had lifetime limits on their coverage.

The BCRA is likely to bring back plans that do not cover essential benefits and that do have caps. This would be a disaster for those with kidney disease.

• What would happen to me if I get my health plan from an Exchange?
  The BCRA would cut back the help you may get from the federal government to pay for an Exchange health plan. Instead of helping those who earn less than 400% of the federal poverty limit, the BCRA would drop the help level to less than 350%. ALL help would stop in 2019. And, instead of tax credits going for plans that cover 70% of your health care costs—the BCRA would only cover 58%. So, you would pay a lot more for a health plan that covers a lot less.
  This map can help you can see out how this change will impact YOU. Let’s say you live in Lexington County, SC, like I do. Let’s say you are 60 years old. And, you earn $43,875 (375% of the federal poverty limit), and have a silver plan. You would spend 8% of your income for an ACA health plan —but 36% under the BCRA—and, it would cover less. In rural areas like Maine and Alaska, you would have to spend almost half of your income on health care premiums under the BCRA.
  Are you over age 59? The BCRA could cost you a lot more. ACA rules do not allow Exchange health plans to charge older people more than three times what younger people are charged. The BRCA will raise this to five times more than what younger people are charged.
• What would happen to me if I have a health plan through my employer?
  A company that operates in more than one state can pick a health plan from any state to use for all employees. Your employer could choose a plan from a state with NO essential health benefits. It could choose a plan with annual or lifetime caps—or, all of the above. Even if YOU live in a state that does not approve these changes, you would be stuck. The BCRA also lets large employers not offer health plans. So, you might not be able to get a plan through work at all.
• What would happen to me if I (or someone I love) is on Medicaid?
The BCRA makes a massive change to the way Medicaid is paid for. Now, states get federal funds based on how much they spend to cover people. All who qualify can get Medicaid. If costs rise (more people need it or there is new, more costly care), states get more money. BCRA would limit how much each state can get for Medicaid. The amount will go up only based on the Consumer Price Index for health care + 1% through 2025. After 2025, it will only go up based on the Consumer Price Index for all goods (which tends to be far lower). Even worse, the BCRA also lets states get Medicaid funding in a “block grant”; a fixed sum for all of their Medicaid costs for 10 years. This sum cannot go up even if more people need Medicaid.
States will have no choice but to make deep cuts. This may mean that your state will not pay for transportation to dialysis or home health care. New technology, like artificial implantable kidneys and portable wearable dialysis, will be too costly. The Congressional Budget Office concludes that the BCRA will cut $772 billion from Medicaid and 15 million fewer Americans will have Medicaid by 2026. If you have Medicaid because you live in a state that expanded it, the BCRA will keep this program until 2020. After that, the program will be cut back—and will end in 2023. Your state may drop you or your fellow kidney warriors from Medicaid when it gets less funding for your care. The BCRA also says states can ask those on Medicaid to re-apply every 6 months (or even more often). If you or a loved one has ever applied for Medicaid, you know what a paperwork nightmare it can be. Under the BCRA, you might have to do that each month. Imagine how stressful that would be!
• Would the BCRA make my health care cheaper?
  If you have kidney disease, there is nothing in the BCRA that will lower your costs. You may also have other illnesses like diabetes or high blood pressure. You need regular (and costly) health care. You may need dialysis every week of every year or a transplant. You need to see your doctors (lots of them!). You need to take lots of (costly) prescription drugs. You need lab work. You need surgeries for fistulas and PD catheters. You may be in the hospital. You may need physical therapy. You may need medical transportation. You may need substance use or mental health treatment. You will need to pick a plan that will cover all of your health care needs and treatments. With the BCRA, your health care premiums may dramatically rise to get a plan that will cover all of your needs.
• What would happen to public health programs that help kidney disease patients?
  The ACA created the Prevention and Public Health Fund to create programs to improve the health of Americans. This fund pays for things that help those with kidney disease, such as chronic disease self-management, diabetes, and prevention of heart disease, stroke, and infection. The BCRA gets rid of the fund.

Because of all of these issues, NO patient, health professional or health provider groups support the BCRA. NONE of these groups were involved in writing the BCRA. In the couple of days since the BCRA was released last Thursday, the American Medical Association, American Academy of Pediatrics, American Psychiatric Association, Children’s Hospital Association, AARP and others have come out to strongly oppose this bill. Six doctor groups oppose it, stating the “bill contains provisions that would do great harm to patients by repealing and undermining essential coverage and key patient protections established by the Affordable Care Act and make health care unaffordable for millions of Americans.”

In June 2017, 120 patient groups (including the Polycystic Kidney Disease Foundation) came together to oppose cuts to Medicaid in health care reform like those in the BCRA. The National Health Council speaks for people with chronic diseases and their families and includes the American Kidney Fund and National Kidney Foundation. They oppose the BCRA, stating it “will have a devastating impact on people with chronic conditions, who will pay more for access to less care.”The National Kidney Foundation (NKF) says “this bill allows states to eliminate the essential health benefits currently provided under the Affordable Care Act, and permits insurers to discriminate against people with pre-existing conditions by not covering vital medications and treatments they need to manage their conditions. For kidney patients, this could include treatments such dialysis or transplantation and medications.” The NKF went on to say, as state Medicaid budgets are tightened across the nation, states may look to reduce the populations they cover and eliminate expensive, but critical, benefits like dialysis treatments.

Since the start of the ACA, there have been valid concerns about how good a job it does. People may have high deductibles and co-payments. Each year, there are fewer Exchange plans to choose from. There are ways we could improve the ACA to help you with kidney disease. But, I was a renal social worker before the ACA came out. I worked with patients who could not find any health plan they could afford. I know how impossible it was for someone under 65 to find a Medicare supplement, or a health plan that was affordable at all. Before the ACA, there were no good options for those with kidney disease who needed a health plan but made too much to get Medicaid. Dialysis and kidney transplant patients often reached their annual or lifetime caps on their health plans.

Concerned about changes the BCRA would make to your health plan? CALL YOUR SENATORS NOW—or visit their local or Washington DC offices.

Tell them where you live and how you think the bill will impact your kidney disease care.

There is no good reason why Congress needs to vote on this bill within days of it going public. Ask them to wait to vote on the bill until you—and they—have read and understood it and all of its changes and amendments.

CALL TODAY to tell YOUR elected official what you think of this bill that would dramatically impact your health.

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Nephrology News & Issues article: Earning a paycheck: New initiative focuses on keeping CKD patients working

KIDNEY CARE COMMUNITY

Earning a paycheck: New initiative focuses on keeping CKD patients working

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MARK E. NEUMANN — JUNE 22, 2017

A report from the American Association of Kidney Patients and the Medical Education Institute outlines initial steps to help employed individuals with progressing chronic kidney disease keep their jobs.

The 78-page paper, entitled “KidneyWorks: A job retention program for people with chronic kidney disease,” includes a website which provides resources and serves as the group home base for developing recommendations presented in the report.

The report is the first phase of the KidneyWorks’ initiative. Phase 2 will involve refining the goals set forth in the white paper and developing a tool kit for patients and employers to help with job retention. Phase 3 will involve putting the toolkit to work in the CKD community.

The report is based on a consensus conference organized by the AAKP and MEI in Washington, D.C. last July with more than 30 national experts in the fields of patient engagement, renal care, health and insurance data mining, labor force data mining, federal reimbursement, physical exercise, renal social work and vocational rehabilitation.

During the conference, stakeholders identified issues and barriers that interfere with patient goals to stay healthy, remain engaged, continue working and paying taxes. Expert participants formulated strategies and recommendations to help patients slow progression of their disease, successfully manage symptoms, maintain incomes and standards of living and preserve their quality of life.

There was an “overwhelming sense that [employment] needed to be addressed,” said AAKP president Paul Conway and a 20-year kidney transplant recipient. Prior research by MEI through its Life Options Program www.lifeoptions.org showed that patients who chose peritoneal dialysis had a stronger likelihood of staying employed.

“We have been interested in this for a very long time,” MEI President Dori Schatell told NN&I. “A large portion of work on quality of life for kidney patients is done overseas. In the U.S., we treat renal failure as a clinical problem, but it’s not like that. Every single aspect of life is affected by kidney disease.”

Getting assistance early

Conway and Schatell agree that intervention with CKD patients when the disease is still in early stages is the right time to help patients keep their jobs. People give up jobs as CKD worsens because “they are exhausted; they become anemic. And we don’t treat it,” said Schatell. Conway said a key team player will be health plans who see the value of keeping patients healthy and keeping them employed. Slowing down the progression of CKD, and its effects, will help people feel healthy enough to stay on the job, he said.

The report’s authors note: “Kidney disease is both costly and devastating, but non-dialysis chronic kidney (ND-CKD) does not have to mean permanent disability. Working-age Americans who are diagnosed with CKD can have far greater independence to pursue their aspirations, achieve better health outcomes and contribute more fully to their families and society if they are able to slow the progression of their disease and stay employed. Barriers to their desire and ability to keep working must be identified and removed.”

While many working-age people with CKD do work, the report says that, between 2006 and 2014, 68,341 people with CKD lost their jobs in the six months before they developed ESRD.

“Keeping a job helps ensure access to preventive care they desperately need to delay or avoid kidney failure—and remain active, productive, tax-paying citizens,” the authors note.

Recommendations from the group to help patients retain employment are divided up by different specialties. Overall, five core recommendations include:

1. Raise awareness of CKD among the general public and those most at risk. Use creative approaches to target employers, organizations, clinicians, patients and families with key messages.
2. Identify CKD early and provide optimal medical and psychosocial management.
3. As soon as CKD is diagnosed, provide patients and family members with employment-supportive education. To continue working, patients must learn to self-manage CKD, understand their rights on the job, and obtain job support.
4. Take active steps to slow CKD progression. Help patients learn how to control blood pressure and blood sugar control, to exercise, lose weight, limit dietary protein, quit smoking, and learn symptoms to watch for and report.
5. Support kidney transplant recipients in the workforce. After a transplant, encouraging continued work, identifying meaningful work that creates a sense of purpose, encouraging employer flexibility, and offering vocational support are proven interventions to help people stay in the workforce.

Employers should allow flex-time or time off for medical appointments to promote better employee health. Likewise, these employers should retain workers with CKD to avoid the high costs of hiring and training new employees, many of whom will also have one or more chronic illnesses.

Medical and professional societies should also consider developing performance measures to support patient employment throughout CKD. Increasing nephrology fellows’ awareness of the challenges faced by employed patients—and the many benefits to patients and their families—and society—of continuing to work with ND-CKD.

For dialysis providers, the workgroup recommends that appointment times be made available for patients to accommodate their work schedules. They should also be proactive about educating patients about the value of working and help them avoid disability when possible. “Remember that patients who can keep their jobs are more likely to retain employer group health plans that will bring in more revenue to a practice or clinic than Medicare or Medicaid,” the authors note.

Government policy makers should also make it easier for business to hire CKD patients, including:

• Recommend that government and private health plans cover early CKD screening of those who are at increased risk of progression
• Encourage insurance companies, providers, and businesses to make it financially feasible to hire and retain employees with chronic illnesses, including ND-CKD.
• Promote training for vocational rehabilitation counselors, social workers, and physicians that includes education about the unique needs of CKD patients who want to keep their jobs.
• Provide tax credits for employers of any size to make accommodations, including telework when feasible, for those with chronic illnesses and disabilities.
• Develop a national education campaign for employers and employees to explain the Americans with Disabilities Act and the Family and Medical Leave Act, and to debunk myths about hiring and retaining employees with a chronic illness.
• Consider amending the Medicare Improvements for Patients and Providers Act (MIPPA) to expand qualified CKD education providers to include clinical social workers and add employment as a topic.
• Expand MIPPA Kidney Disease Education (KDE) Services to include any Medicare patient diagnosed with CKD, not just Stage 4.
• Study the feasibility of expanding the Family Medical and Leave Act to additional employers and encouraging employers to continue to pay workers during a medical leave of absence.

For other federal agencies, including CMS, the author suggest that the agency collect data on employment up to five years prior to ESRD and include the type of job (e.g., sedentary, active, mixed) on Form CMS-2728 (ESRD Medical Evidence Report).

Also:

• Reimburse physicians, non-physician providers, and CKD health care teams to discuss goals, employment benefits, and barriers with their patients and work together to overcome them.
• Provide sufficient reimbursement to motivate registered dietitians and clinical social workers to become Medicare providers so they can be reimbursed to see ND-CKD patients prior to ESRD.

NN&I article "No more 'renal diet' - tell me what I can eat!" by Peggy Harum

CLINICAL

No more ‘renal diet’ – tell me what I can eat!

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PEGGY HARUM, RD, LDN — JUNE 20, 2017

 Getty Images/iStockphoto/ThinkStock

I recently attended a meeting to hear nephrologist Kamyar Kalantar-Zadeh MD, MPH, PhD, give a talk entitled “A balanced approach to phosphorus balance.” He began to tell attendees that European patients choose their dialysis clinic based on the meals they serve during the treatment. Imagine that.

The late Bernard Charra, MD, who was in charge of a dialysis clinic in Tassin, France, used to serve patients multiple-course meals––and wine––during their eight-hour, overnight hemodialysis treatments. So while U.S. clinics see eating during dialysis as an infection control or choking risk, other countries seem to understand the value.

What we need to control

Kalantar reviewed the elements of the renal diet, including:

• Getting the right amounts of calories and protein
• Limiting certain nutrients, like sodium, potassium, phosphorus, and fluids

He pointed out that 20-78% of patients are noncompliant with these diet restrictions. “Renal diets are arguably the most restrictive for any patient group and many of the restrictions contradict recommendations for healthy eating,” he said.

Would you follow these rules?

Dr. Kalantar stated my views exactly when he said, “The renal diet is awful – what can [patients] eat?” The renal dietitian struggles to convince the patient to consume enough protein; studies have shown that over half of dialysis patients receive less than the recommended protein intake (at least 1.0 g/kg/day). Kidney Dialysis Outcomes Quality Initiative guidelines recommends 1.0 to 1.2 g/kg/day.

An increase in dietary phosphorus per gram of protein leads to an increase in mortality, he said. He encouraged the audience to prescribe the strongest phosphate binder to help decrease the pill burden. Interestingly, he also encouraged letting the patients eat during dialysis and then take the strongest binder with the meal. He recommended two new iron-based binders that may help with this.

• chewable sucroferric oxyhydroxide. This has less pill burden and less absorbable iron
• ferrous citrate has more absorbable iron. Sucroferric oxyhydroxide maintenance dose maintained serum phosphorus < 5.0 mg/dl with significantly fewer pills. No serum ferritin changes were observed from baseline after 52 weeks on Sucroferric oxyhydroxide, Dr. Kalantar reported.

Surprisingly, no serious adverse events were observed for patients eating during dialysis.  In hypoalbuminemic hemodialysis patients, high-protein meals during dialysis, combined with a potent phosphorus binder, are safe and increase serum albumin while controlling phosphorus.

Dr. Kalantar collaborates frequently with Christian Shinaberger, MPH, PhD, whose doctoral thesis was entitled, “Should serum phosphorus be controlled by decreasing dietary protein in dialysis patients?” In an article in the American Journal of Clinical Nephrology (2008), Dr. Shinaberger and colleagues said that a decline in serum phosphorus with concomitant decline in protein intake is associated with increased death risk. They also found that controlling phosphorus while maintaining high dietary protein intake may be associated with the best survival in hemodialysis patients.

Protein counts

At the same meeting was Adamasco Cupisti, MD, from the University of Pisa, Italy. He suggested that the nutritional goal for ESRD patients is to give the right amount of protein but with the lowest phosphorus load as possible. He agreed that a conflict exists between protein and phosphorus intake. In Europe, they suggest boiling meat and poultry sources of protein to decrease the bioavailability of phosphorus. Boiling reduces the mineral content. When the meeting was over, I approached him and told him our patients don’t like to cook––so getting them to boil the animal sources of protein before they prepare it would be difficult.  He encouraged more phosphorus from plant foods as there is less bioavailability with less effective load of phosphorus.

Some of the large dialysis providers show lab results that indicate the “nPCR” (the normalized protein catabolic rate) should be 0.8 to 1.2 g/kg/day. The trick is to eat the right amount of protein but with the lowest phosphorus load as possible. The organic phosphorus, in animal proteins such as meat, poultry, dairy and fish, is about 60% absorbed. Organic phosphorus in plant proteins found in nuts and beans is 20-40% absorbed while phosphate containing preservatives that are added to beverages, processed foods and “fast foods” are 100% absorbed. Dr. Cupisti said.

Make it easy

My job as a renal dietitian is to provide super easy recipes that patients can prepare with the least amount of energy. So a peanut butter (smooth or crunchy) and jelly sandwich might just make a good meal after all. Or how about some beans and rice for a snack? One egg white has only 5 mg of phosphorus – the yolk adds 80 mg of phosphorus. An omelet with 4 egg whites (pure protein) and one yolk would be high in protein, cheap and easy to make.

Conclusion

Dr. Kalantar would agree that paying more attention to dietary, non-protein restriction, e.g., fast food and high additive foods, is important. Ask dialysis patients to eat more protein––including during dialysis, he agrees––while paying more attention to the phosphorus/protein ratio. Among the two new iron-based binders, sucroferric oxyhydroxide has less pill burden and less absorbable iron, whereas ferrous citrate has more absorbable iron. Likewise, the non-dietary serum phosphorus control should be reinforced––using phosphorus binders more diligently and using phosphorus binders that are potent with the least pill burden.

My job as a nutritionist is to teach the patient to look at ingredients and avoid anything with “phos” on the label.  It is truly a herculean task to figure it out.  Dietitians are trained to look at the overall diet and help patients individualize meal plans. According to a team at the Rogosin Institute led by Sharon M. Moe, MD, the focus should be on Good Food First and the recognition that food is as critical as medications in the management of patients with chronic kidney disease. In order to achieve this change, there must be an emphasis on the A,B,C, and Ds of kidney nutrition health:

1. Access to affordable, fresh foods
2. Back to basics
3. Cooking: You can do it!
4. Deliver information a patient can understand

In short, Dr. Moe said, we need to make good food and nutrition “cool, fun, funky and fresh.”1

References

1. Moe S. et al. Food as medicine: No more renal “diet.”  ASN Kidney News, Oct/Nov.2016

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